Implementation Of Palliative Care Research Articles

A road less traveled in critical care: A call for improved acceptance and implementation of palliative and supportive care.

In an effort to expedite the publication of articles, AJHP is posting manuscripts online as soon as possible after acceptance. Accepted manuscripts have been peer-reviewed and copyedited, but are posted online before technical formatting and author proofing. These manuscripts are not the final version of record and will be replaced with the final article (formatted per AJHP style and proofed by the authors) at a later time.

Hub and Spokes-Implementation of Basic Palliative Care into University Hospital Practice-A Pilot Study.

Background: The aim is to implement knowledge of basic palliative care in selected departments by the Hub and Spokes model. Methods: Implementation of basic palliative care was designed as a stepwise training model by skills lectures over a time period of 2 years. In each of the six selected oncological and nononcological departments, one physician and two nurses were trained in semi-annual half-day meetings as expert representatives within their departments. Results: Semi-structured interviews were conducted to assess implementation outcomes with 12 nurses and 6 physicians. Overall acceptability was high for all departments and professions. Feasibility was given in all departments. Adoption and penetration of a trained expert representative differed between medical and nursing professions. Implementation was more appropriate in the stationary sector. Implementation costs were low. Conclusion: Expansion of the system into a second follow-up period, including more departments, is planned to ensure sustainability.

Current Status of Integrated Palliative Care Among Parkinson Foundation Centers of Excellence in the United States.

To assess the current structures, knowledge, and readiness to integrate palliative care (PC) into Parkinson disease (PD) care at Parkinson's Foundation Centers of Excellence (COE) in the United States. Three unique surveys were administered to health care professionals/staff at COEs to assess PC (1) resources, (2) knowledge and comfort, (3) clinical experience and processes, (4) barriers, and (5) readiness for implementation. Response rates for the 3 surveys were 97%, 98%, and 56%. In total, 41% of COEs have access to outpatient PC specialists, 71% have mental health counseling, 82% have support groups, and 9% had very limited PC resources. Overall, 74% of providers believed persons with advanced PD should receive PC, and knowledge of PC fundamentals was good across providers. For high-needs persons with PD (PWP), only 16% of physicians and 24% of advanced practice providers made referrals to PC specialists ≥75% of the time, while 9% and 16% never made such referrals. Limited time, space, financing, and staffing were seen as major barriers to PC implementation. In total, 37% of providers were satisfied with their COE's ability to provide PC services. Most COEs report a culture open to change and appear well-positioned to implement PC in a more comprehensive fashion. These results demonstrate the emergence of structures and processes to provide PC to persons with PD at COEs. They also identify concrete opportunities to strengthen integration of PC through educational, quality improvement, and advocacy efforts.

Exploring Parent Experiences With Early Palliative Care Practices in the NICU.

The anxiety and uncertain outcome of an admission of a seriously ill infant to the neonatal intensive care unit (NICU) can cause great stress for parents and contribute to poor mental health outcomes. Early implementation of family-centered palliative care (PC) may provide support for NICU parents. Key concepts of early PC in the NICU include shared decision-making, care planning, and support for coping with distress. The purpose of this study was to explore parent experiences during their child's NICU admission with the early PC practices of shared decision-making, care planning, and coping with distress. Qualitative descriptive methodology was used. Strategies of reflexive journaling, peer debriefing, and data audits were used to enhance trustworthiness. Parents (N = 16) were interviewed, and data were analyzed by conventional content analysis. Targeted recruitment of fathers occurred to ensure they comprised 25% of sample. Parents' descriptions of decision-making were contextualized in gathering information to make a decision, the emotional impact of the decision, and influences on their decision-making. In experiences with care planning, parents described learning to advocate, having a spectator versus participant role, and experiencing care planning as communication. Key themes expressed regarding parental coping were exposure to trauma, survival mode, and a changing support network. These findings highlight key areas for practice improvement: providing more support and collaboration in decision-making, true engagement of parents in care planning, and encouraging peer support and interaction in the NICU and in online communities.

Between hope and disillusionment: ECMO seen through the lens of nurses working in a neonatal and paediatric intensive care unit.

Using extracorporeal membrane oxygenation (ECMO) in paediatric and neonatal intensive care units (PICU/NICU) creates ethical challenges and carries a high risk for moral distress, burn out and team conflicts. The study aimed to gain a more comprehensive understanding of the underlying factors affecting moral distress when using ECMO for infants and children by examining the attitudes of ECMO nurses. Four focus groups discussions were conducted with 21 critical care nurses working in a Swiss University Children's Hospital. Purposive sampling was adopted to identify research participants. The data were analysed using reflexive thematic analysis. Unlike "miracle machine" stories in online media reports, specialized nurses working in PICU/NICU expressed both their hopes and fears towards this technology. Their accounts also contained references to events and factors that triggered experiences of moral distress: the unspeakable nature of the death of a child or infant; the seemingly lack of honest and transparent communication with parents; the apparent loss of situational awareness among doctors; the perceived lack of recognition for the role of nurses and the variability in end-of-life decision-making; the length of time it takes doctors to take important treatment decisions; and the resource intensity of an ECMO treatment. The creation of a multidisciplinary moral community with transparent information among all involved health care professionals and the definition of clear treatment goals as well as the implementation of paediatric palliative care for all paediatric ECMO patients should become a priority if we want to alleviate situations of moral distress. The creation of a multidisciplinary moral community, clear treatment goals and the implementation of palliative care for all paediatric ECMO patients are crucial to alleviate situations of moral distress for nurses, and thus to improve provider well-being and the quality of patient care in PICU/NICU.

Palliative care for in-patient malignant glioma patients in Germany

ObjectiveMalignant gliomas impose a significant symptomatic burden on patients and their families. Current guidelines recommend palliative care for patients with advanced tumors within eight weeks of diagnosis, emphasizing early integration for malignant glioma cases. However, the utilization rate of palliative care for these patients in Germany remains unquantified. This study investigates the proportion of malignant glioma patients who either died in a hospital or were transferred to hospice care from 2019 to 2022, and the prevalence of in-patient specialized palliative care interventions.MethodsIn this cross-sectional, retrospective study, we analyzed data from the Institute for the Hospital Remuneration System (InEK GmbH, Siegburg, Germany), covering 2019 to 2022. We included patients with a primary or secondary diagnosis of C71 (malignant glioma) in our analysis. To refine our dataset, we identified cases with dual-coded primary and secondary diagnoses and excluded these to avoid duplication in our final tally. The data extraction process involved detailed scrutiny of hospital records to ascertain the frequency of hospital deaths, hospice transfers, and the provision of complex or specialized palliative care for patients with C71-coded diagnoses. Descriptive statistics and inferential analyses were employed to evaluate the trends and significance of the findings.ResultsFrom 2019 to 2022, of the 101,192 hospital cases involving malignant glioma patients, 6,129 (6% of all cases) resulted in in-hospital mortality, while 2,798 (2.8%) led to hospice transfers. Among these, 10,592 cases (10.5% of total) involved the administration of complex or specialized palliative medical care. This provision rate remained unchanged throughout the COVID-19 pandemic. Notably, significantly lower frequencies of complex or specialized palliative care implementation were observed in patients below 65 years (p < 0.0001) and in male patients (padjusted = 0.016). In cases of in-hospital mortality due to malignant gliomas, 2,479 out of 6,129 cases (40.4%) received specialized palliative care.ConclusionDespite the poor prognosis and complex symptomatology associated with malignant gliomas, only a small proportion of affected patients received advanced palliative care. Specifically, only about 10% of hospitalized patients with malignant gliomas, and approximately 40% of those who succumb to the disease in hospital settings, were afforded complex or specialized palliative care. This discrepancy underscores an urgent need to expand palliative care access for this patient demographic. Additionally, it highlights the importance of further research to identify and address the barriers preventing wider implementation of palliative care in this context.

Perceptions of Pancreatic Surgeons and the Current Status of Palliative Care for Pancreatic Cancer in China: A Multi-Center Online Questionnaire Survey

Objective: To investigate the perceptions of pancreatic surgeons regarding palliative care for pancreatic cancer and the current status of palliative care for pancreatic cancer patients in China. Methods: An online questionnaire consisting of thirty-five questions in five domains, including basic information of the respondents, personal interest, training and experiences of palliative care, recognition of the importance of palliative care, palliative care in the hospital of the respondents, and advice to improve the service of palliative care for pancreatic cancer, was distributed to pancreatic surgeons by the WeChat APP. All the data were automatically recorded and can be downloaded. The respondents' perceptions of palliative care and the current status of palliative care were depicted, and the factors influencing the perceptions of the respondents and palliative care in hospitals were further analyzed. Results: Responses from 429 pancreatic surgeons were validated. 81.4% were from tertiary hospitals, and 18.6% were from secondary hospitals. 94.2% were from general hospitals, and 5.8% were from cancer hospitals. Most surgeons have worked for over five years (93%), 72% had senior titles, and 54.5% held administrative positions. 49% have not read papers on palliative care before. 73.4% of the hospitals did not have a palliative care team, 77.9% did not have specific ward or bed for palliative care, 76.2% of the surgeons thought palliative care needed more attention in their hospitals. 97.4% of the surgeons thought palliative care was important for pancreatic cancer patients, and 94.9% were willing to join the palliative team. 46.6% of the surgeons thought palliative care should be conducted once pancreatic cancer was diagnosed. Most surgeons thought palliative care was helpful and should be involved in the multidisciplinary team. Regarding the geographical differences, surgeons and hospitals in North China performed better than in other regions. Surgeons with experience in clinical trials of pancreatic cancer performed better. The top three advice from the surgeons to promote palliative care were more education and training, seminars, and public broadcasting. 69.9% of the surgeons have concerns about the legal issue of implementation of palliative care. Conclusion: In general, the majority of pancreatic surgeons in China lack training and experience in palliative care for pancreatic cancer, and the current status of palliative care in most hospitals needs to be further improved. Prevalence of the participants think that palliative care is very important for pancreatic cancer patients. Palliative care should be provided once pancreatic cancer is diagnosed, and palliative care should be involved in the multidisciplinary team. More seminars, education and training, and public broadcasting are practical ways to improve palliative care for pancreatic cancer patients.

Palliative Care in Sub-Saharan Africa: A Narrative Review.

Background: As a person nears the end of their life, culture and ethnicity increasingly drive preferences and priorities for care. Understanding these preferences and priorities is fundamental to health care professionals' goals to respect decision making and support the individual throughout this phase of life. Across Africa, several countries are in the initial stages of implementing palliative care services in their burgeoning health care systems. Moving forward, it is imperative to consider cultural similarities and differences when compared with the Western world, where the field of palliative care evolved, to create a tailored palliative care approach that is consistent with African culture. In palliative care, understanding cultural preferences and priorities requires communication between the patient and the provider and is a crucial step toward a successful implementation in Africa. A paternalistic patient-provider relationship is the current leading model in sub-Saharan Africa.1 Aim: This narrative review explores the prevalence of paternalism and explores its appropriateness and necessity in the current application of palliative care in sub-Saharan African countries. Methods: This narrative review was conducted using four databases as well as hand searching of relevant articles sourced from references of already selected articles. A total of 730 articles were identified. Fourteen articles met the inclusion/exclusion criteria set for this narrative review. Results: In sub-Saharan Africa, the leading patient-provider relationship was determined to be paternalistic. Reasons for this were language, education, cultural norms and expectations, lack of time, and benevolence. Conclusions: The implementation of palliative care often relies on communication of patient desires and goals. Consideration is needed to determine how a provider can appropriately know these factors in a paternalistic relationship.

A questionnaire survey on the implementation of palliative care in the emergency department in China

ObjectivesThis study was conducted to characterize the need for palliative care and its effect on patients with end-stage disease in the emergency department (ED).DesignThis was a prospective cohort study. A questionnaire survey was administered to patients with end-stage disease who were admitted to the resuscitation room of the ED and expected to live less than 6 months.ResultsA total of 82 of 2095 patients admitted to the resuscitation room were included. Only 1 (1.22%) patient had ever received palliative care before admission. Nine patients received palliative care consultation after admission, and they were more likely to select medical places of death accompanied by their families and do not resuscitate orders at the end of life after consultation (P < 0.05). Whether the disease had previously been actively treated and the number of children impacted the choice of treatment at the end of life (P < 0.05).ConclusionsAmong patients with end-stage disease admitted to the ED, knowledge of palliative care was lacking. Palliative care could help them avoid the damage caused by pointless resuscitation.

Programmatic Palliative Care Consultations in Pediatric Heart Transplant Evaluations.

Guidelines advocate for integrating palliative care into the management of heart failure (HF) and of children with life-limiting disease. The potential impact of palliative care integration into pediatric HF on patient-centered outcomes is poorly understood. The present study sought to assess the association of programmatic implementation of palliative care into the heart transplant evaluation process with hospital-free days (HFD) and end of life (EOL) treatment choices. The study included patients less than 19 years of age who underwent a heart transplant evaluation between February 2012 and April 2020 at a single center. Patients evaluated in the programmatic palliative care (PPC) era (January 2016-April 2020) were compared to patients evaluated in the pre-PPC era (February 2012-December 2015). The study included 188 patients, with 91 (48%) in the PPC era and 97 (52%) in the pre-PCC era. Children < 1 year of age at the time of the evaluation represented 32% of the cohort. 52% of patients had single ventricle physiology. PPC was not significantly associated with increased HFD (IRR 0.94 [95% CI 0.79-1.2]). PPC was however associated with intensity of EOL care with decreased mechanical ventilation (OR 0.12 [95% CI 0.02-0.789], p = 0.03) and decreased use of ionotropic support (OR 0.13 [95% CI 0.02-0.85], p =0.03). PPC in pediatric heart transplant evaluations may be associated with less invasive interventions at EOL.

Embracing family presence: exploring the reasons for family decision-making dependence on in-hospital palliative care for cancer patients

The implementation of home-based palliative care is widely recognized as a commendable and effective model of care provision. However, it is noteworthy that families residing in Indonesia exhibit a propensity to predominantly seek palliative care services within hospital environments for their family members afflicted with palliative-stage cancer. Therefore, the aim of this research was to investigate the perceptions of family members in their decision-making process regarding the care of palliative-stage cancer patients at home. This qualitative study employed a descriptive phenomenological approach. Data were obtained through in-depth interviews with ten Indonesian family members of palliative-stage cancer patients refusing discharge, and were analyzed using the Colaizzi method. Furthermore, the inclusion criteria were that the dominant family member who cares for the patient lives with the patient and is involved in the decision-making process. Two themes emerged from this study: i) a lack of support in decision-making, and ii) pain and chronic sorrow. Home-based palliative care for cancer patients presents significant decision-making challenges and persistent grief for families, necessitating robust support and education from healthcare professionals such as nurses and policymakers. Additionally, a national health insurance system that enables effective palliative care is crucial.

Experience of multidisciplinary medical teams on humanistic palliative care in oncology wards: a descriptive qualitative study in Southern China

ObjectivesThis study aimed to explore the experiences of multidisciplinary medical teams in implementing humanistic palliative care within the oncology ward.DesignPurposive and snowball sampling methods were used in this qualitative study,...

Communication Gaps in Georgian Palliative Medicine: Ethical and Legal Review

Introduction: Difficulties in communication, decision-making, and end-of-life management have emerged in the implementation of palliative care in recent decades. The imperfection of ethical issues was also highlighted. This fact is confirmed once again by a study conducted by the oncology department of the Batumi High-technology Hospital, which aimed to study the adequate perception of existing oral pathologies by patients under palliative care and their impact on the quality of life.&#x0D; Aim: We aimed to discuss the mentioned problem within the framework of bioethics and Georgian legislation.&#x0D; Methods: Despite the few amount of literary sources, we tried to discuss the mentioned issue based on Georgian legislation and also existing literature.&#x0D; Conclusion: Thus, as we mention in medical activities there are cases when the real diagnosis is not told to the patient for ,,his favor'', also there are cases when an inappropriate diagnosis is made, which can lead the patient to a fatal condition. In this case, the patient can civilly protect his rights.&#x0D; The best option is to provide the patient with information in the correct form so that it does not mean the end of the world and does not cause depression in him. The patient should be able to pass the last stage of life peacefully and with dignity.

Clinical outcomes of a joint ICU and palliative care multidisciplinary rounding model: A retrospective cohort study.

This retrospective cohort study assessed whether implementation of a joint inpatient palliative care (IPC) and ICU multidisciplinary rounding model affected clinical outcomes including ICU length of stay (LOS). Beginning in October of 2018, an IPC physician joined the pre-existing ICU multidisciplinary rounds. Data were collected for ICU patients admitted during a 6-month period before this intervention and a 6-month period after the intervention. Data were extracted from an integrated electronic medical records (EMR) data system and compared by Wilcoxon and chi-square test for continuous and categorical variables respectively. Negative binomial regression was used to analyze the primary outcome measure, ICU LOS. Patients in the intervention group spent fewer days in the ICU (3.7 vs. 3.9 days, p = 0.05; RR 0.82, 95% CI 0.70-0.97, p = 0.02) and in the hospital (7.5 vs. 7.8 days, p<0.01) compared to the pre-intervention group. The rate of CPR was lower in the intervention group, but the difference was not statistically significant [13(3.1%) vs. 23(5.3%), p = 0.10]. The groups did not differ significantly in rate of hospital mortality, number of days connected to mechanical ventilation via endotracheal tube, or bounceback to the ED or hospital. Multivariable analysis of the primary outcome demonstrated that patients with prior palliative care involvement had longer ICU LOS (RR 1.46, 95% CI 1.04-2.06, p = 0.03) when controlling for other variables. The presented joint IPC-ICU multidisciplinary rounding model was associated with a statistically significant reduction in ICU and hospital LOS, but the clinical significance of this reduction is unclear.

Put on the sidelines of palliative care: a qualitative study of important barriers to GPs’ participation in palliative care and guideline implementation in Norway

Background Demographic changes, the evolvement of modern medicine and new treatments for severe diseases, increase the need for palliative care services. Palliative care includes all patients with life-limiting conditions, irrespective of diagnosis. In Norway, palliative care rests on a decentralised model where patient care can be delivered close to the patient’s home, and the Norwegian guideline for palliative care describes a model of care resting on extensive collaboration. Previous research suggests that this guideline is not well implemented among general practitioners (GPs). In this study, we aim to investigate barriers to GPs’ participation in palliative care and implementation of the guideline. Methods We interviewed 25 GPs in four focus groups guided by a semi-structured interview guide. The interviews were recorded and transcribed verbatim. Data were analysed qualitatively with reflexive thematic analysis. Results We identified four main themes as barriers to GPs’ participation in palliative care and to implementation of the guideline: (1) different established local cultures and practices of palliative care, (2) discontinuity of the GP–patient relationship, (3) unclear clinical handover and information gaps and (4) a mismatch between the guideline and everyday general practice. Conclusion Significant structural and individual barriers to GPs’ participation in palliative care exist, which hamper the implementation of the guideline. GPs should be involved as stakeholders when guidelines involving them are created. Introduction of new professionals in primary care needs to be actively managed to avoid inappropriate collaborative practices. Continuity of the GP–patient relationship must be maintained throughout severe illness and at end-of-life.

Comparison of the Life-Sustaining Treatment, Cardiopulmonary Resuscitation, and Palliative Care Implementation Rates between Homebound Patients with Malignant and Nonmalignant Disease Who Died in an Acute Hospital Setting: A Single-Center Retrospective Study.

This study investigated and compared the implementation of life-support treatment (LST), cardiopulmonary resuscitation (CPR) implementation rates, and the influence of acute illnesses on the introduction of palliative care (PC) to homebound patients with malignant and nonmalignant disease, who subsequently died in an acute hospital setting. Among the homebound patients admitted to the ward in our hospital from 2011 to 2018, we investigated and compared the attributes, underlying diseases, causes of death, and rates of implementation of LST, CPR, and PC between patients with malignant and nonmalignant disease who died in the ward, using data obtained from hospitalization records. Furthermore, acute illnesses related to the introduction of PC were examined. Of the 551 homebound patients admitted to the ward of an acute hospital, 119 died in the ward. Of the deceased patients, 60 had malignant disease and 59 had nonmalignant disease. Patients with nonmalignant disease had higher rates of LST implementation and CPR and a lower rate of PC. Patients with infectious disease, who required antimicrobial drugs, had significantly lower PC introduction rates. Understanding the influence of the timing of PC introduction in acute care for homebound patients with advanced chronic illness are issues to be considered.

Cuidados paliativos em neonatologia sob a ótica do enfermeiro

Abstract Objective to grasp nurses’ perceptions and experiences about palliative care in neonatology. Method qualitative research, with palliative care as its conceptual basis, carried out with nurses working in Neonatal Intensive Care Units of three hospitals located in a municipality in the northern region of Paraná. Data were collected from November 2019 to January 2020, analyzed using the Discourse of the Collective Subject methodological framework. Results twenty nurses participated, most of them with less than 5 years of experience. Three topics reflect nurses’ perceptions and experiences: 1) Palliative care: from training to professional experience; 2) Meaning palliative care in neonatology; 3) Eligibility for neonatal palliative care. Conclusion and implications for practice nurses report gaps in their training for assisting newborns in palliative care; however, many presented an understanding of the meaning of palliative care with a focus on quality of life of babies affected by an incurable situation or illness, including the family. These aspects point to the need for training and health education focused on this topic as well as the implementation of palliative care in the neonatology service.

Nurse-led implementation of palliative care in the intensive care unit

Nurse-led implementation of palliative care in the intensive care unit

Barriers and facilitators to national guideline implementation for palliative cancer care in a Danish cross-sectoral healthcare setting: A qualitative study of healthcare professionals' experiences.

Patients with incurable cancer should receive general palliative care according to their needs, as provided through collaboration between hospital departments, municipalities, and general practices and as outlined in national guidelines. However, the implementation of general palliative care in Denmark has been inadequate. This study aimed to investigate the healthcare professionals' (HCPs') perceptions on barriers to and facilitators of the implementation of the Danish National Guideline (NG) for general palliative care. This descriptive, qualitative study was guided by the Consolidated Framework for Implementation Research (CFIR). Qualitative focus group and individual interviews were conducted with 23 HCPs. The interview guide, coding, analysis, and reporting of findings were developed within the CFIR framework. The main barriers to implementing NG were as follows: lack of knowledge about the NG, lack of an implementation plan, and insufficient communication and collaboration across sectors. Important facilitators were as follows: HCP motivation to meet palliative care needs, HCPs with special functions taking responsibility for incorporating NG into local guidelines, and the role of district nurses specialised in palliative care as opinion leaders providing security and continuity for the HCPs working in palliative care. To address the needs of patients with incurable cancer, greater efforts are required on implementing general palliative care. Although HCPs in our setting were motivated to improve NG implementation, financial resources and strategies are necessary to ensure sufficient knowledge uptake and accommodate identified barriers in order to translate the NG into practice.

The Experiences of Nursing Managers in Implementing Palliative Care in Long-Term Care Facilities.

The purpose of this study was to explore the experiences of nursing managers in implementing palliative care in long-term care facilities and to provide recommendations for managers who plan to introduce palliative care into their facilities. This study used semi-structured interviews and grounded theory methodology, with purposive sampling. A total of 11 long-term care facilities in eastern Taiwan that had implemented palliative care were selected, and 11 facility nursing managers participated in in-depth, face-to-face interviews. The introduction of palliative care in long-term care facilities can be divided into four stages: (1) the opportunity for change, (2) playing a supportive role, (3) a new collaboration model, and (4) facility transformation. The core category shared by the participants may be summed up as "the palliative care captain in the facility". It reflects the spirit of the successful implementation of palliative care by managers in long-term care facilities. The study reveals that during the initial phases of implementing palliative care, the palliative care teams assume a crucial leadership role, while the facilities play a supportive role. At this stage, managers should focus on personnel training and addressing internal issues within the facilities to facilitate successful collaboration with the palliative care teams. In the later stages, the facilities transition from a supportive role to one of independence, marking a critical juncture for the facilities' potential stable development. During this period, managers are tasked not only with establishing the facilities' own palliative care team but also with facilitating the transformation of staff from learners to instructors. Finally, even after successful implementation, managers must contemplate how to innovate and set more ambitious goals.