Perceptions Of Palliative Care Research Articles

Haematologists and palliative care: a multicentric qualitative study

ObjectivesEarly palliative care leads to meaningful improvements in physical and psychosocial symptoms, as well as quality of life, in patients with advanced cancer. Patients with haematological malignancies, despite a high...

Variability in End-of-Life Care and Perception of Palliative Care Among Physicians in the Hematology Unit of a Reference Service in the State of Bahia, Brazil

Variability in End-of-Life Care and Perception of Palliative Care Among Physicians in the Hematology Unit of a Reference Service in the State of Bahia, Brazil

Assessing the Feasibility and Implementation of Palliative Care Triggers in a Surgical Intensive Care Unit to Improve Interdisciplinary Collaboration for Patient and Family Care.

Although palliative care focuses on supporting patients and families through serious illness, it is underutilized in the surgical intensive care unit (SICU). In 2020, patients in the SICU represented only 2.75% of our palliative team's consults. We hypothesize that utilization of palliative care triggers in the SICU will increase collaboration between SICU and palliative care teams and improve patient/family experiences. After reviewing our team's consultation records and the published literature, a consult trigger program was implemented for patients with a SICU length of stay >10 days, unplanned SICU readmission, or new diagnosis of metastatic cancer. A pre-intervention survey assessed SICU providers' perceptions of palliative care. Retrospective analysis evaluated qualitative and quantitative measures. 97% of SICU providers felt increased palliative care would be helpful. During the 6-month project, January 1, 2021 - June 30, 2021, our palliative team performed 27 triggered consults, representing 3.3% of the total 818 consults performed during this period and thus a 20% increase in SICU palliative consults. Triggered consults represented many primary surgical services and the most common consult reason was length-of-stay. All consults included discussions about goals of care and 16 of the 27 patients/families expressed restorative goals. Numerous notes documented family appreciation.

Do Perceptions about Palliative Care Affect Emergency Decisions of Health Personnel for Patients with Advanced Dementia?

Decision analysis regarding emergency medical treatment in patients with advanced dementia has seldom been investigated. We aimed to examine the preferred medical treatment in emergency situations for patients with advanced dementia and its association with perceptions of palliative care. We conducted a survey of 159 physicians and 156 nurses from medical and surgical wards in two tertiary hospitals. The questionnaire included two case scenarios of patients with advanced dementia presenting gastrointestinal bleeding (scenario I) or pneumonia (scenario II) with a list of possible interventions and 11 items probing perceptions towards palliative care. Low burden interventions such as laboratory tests and intravenous administration of antibiotics/blood were preferred. Palliative measures such as analgesia/sedation were chosen by about half of the participants and invasive intervention by 41.6% (gastroscopy in scenario I) and 37.1% (intubation/mechanical ventilation in scenario II). Medical ward staff had a more palliative approach than surgical ward staff in scenario I, and senior staff had a more palliative approach than junior staff in scenario II. Most participants (90.4%) agreed that palliative care was appropriate for patients with advanced dementia. Stress in caring for patients with advanced dementia was reported by 24.5% of participants; 33.1% admitted fear of lawsuit, 33.8% were concerned about senior-level responses, and 69.7% were apprehensive of family members’ reaction to palliative care. Perceptions of health care workers towards palliative care were associated with preferred treatment choice for patients with advanced dementia, mainly in scenario II. Attitudes and apprehensions regarding palliative care in these situations may explain the gap between positive attitudes towards palliative care and the chosen treatment approach. Acquainting emergency care practitioners with the benefits of palliative care may impact their decisions when treating this population.

Palliative Care for Patients With Heart Failure: Results From a Heart Failure Society of America Survey

Multiple guidelines recommend specialty palliative care (PC) for patients with heart failure (HF), including patients with left ventricular assist devices (LVADs). However, the degree of integration and clinicians' perceptions of PC in HF care remain incompletely characterized. A 36-item survey was sent to 2109 members of the Heart Failure Society of America. Eighty respondents (53% physicians), including 51 respondents from at least 42 medical centers, completed the survey, with the majority practicing in urban (76%) academic medical centers (62%) that implanted LVADs (81%). Among the 42 unique medical centers identified, respondents reported both independent (40%) and integrated (40%) outpatient PC clinic models, whereas 12% reported not having outpatient PC at their institutions. A minority (12%) reported that their institution used triggered PC referrals based on objective clinical data. Of respondents from LVAD sites, the majority reported that a clinician from the PC team was required to see all patients prior to implantation, but there was variability in practices. Among all respondents, the most common reasons for PC referral in HF were poor prognosis, consideration of advanced cardiac therapies or other high-risk procedures and advance-care planning or goals-of-care discussions. The most frequent perceived barriers to PC consultation included lack of PC clinicians, unpredictable HF clinical trajectories and limited understanding of how PC can complement traditional HF care. PC integration and clinician perceptions of services vary in HF care. More research and guidance regarding evidence-based models of PC delivery in HF are needed.

SWK-09. Baseline Survey of Hematology/Oncology/Cellular Therapy Staff/Faculty Perceptions of Palliative Care

Abstract Recent literature has shown that pediatric oncology patients and families prefer early integration of palliative care, yet the perception persists by staff and providers that palliative care has a negative connotation. We examined the baseline views of staff at our tertiary care center, prior to expansion of a formal palliative care service. We will describe baseline survey results in a diverse group of hematology/oncology/cellular therapy staff/faculty. This quality improvement project was conceived by the unit-based palliative care committee to compare baseline and follow-up survey results. We report the baseline results of a convenience sample of providers with varied roles. A validated survey for staff perception of palliative care found in the literature was utilized. After institutional qualitative review board approval, the survey was emailed to members of the inpatient and outpatient units. Demographic data collected included gender, level of education, role, patient population, length of career globally and locally. Perception of palliative care was evaluated by asking questions regarding 1) overlap with disease focused care, 2) risks/benefits of palliative care, and 3) timing of palliative care consults. Results were tabulated and graphed for dissemination to the unit-based palliative care committee. A follow-up survey is planned after integration of the developing formal palliative care service. Longitudinal comparison with statistical analysis will be completed at that time. Although most participants disagreed that palliative care is not consistent with curative care and that early palliative care does not induce parental anxiety, yet is perceived by the lay public as end-of-life care. Strong agreement was demonstrated with items regarding integration of palliative care early in the disease trajectory to decrease suffering. Participants also predominantly agreed that education for patients/families and staff/faculty would ameliorate misconceptions about palliative care. Future evaluation after increased palliative care penetration will provide comparison data.

Medical student experiences and perceptions of palliative care in a middle eastern country

IntroductionTeaching in palliative care (PC) is an important component of medical education. Yet, studies in many countries document a fragmented and inconsistent approach to PC teaching. The goal of this study is to assess PC education, experience, and comfort levels in providing end-of-life care in recently graduated medical students.MethodsA survey was distributed to medical student applicants to residency programs at a large academic medical center in the United Arab Emirates. Descriptive statistics were used to tabulate variable frequencies.ResultsOf 226 surveys, 183 were completed (80.7% response). Over half of respondents (104/183, 56.8%) did not receive any formal PC education or training in medical school. General introduction to PC (64%), pain management (68%), and non-pain symptom management (56%) were the most common topics. Only 13% (24/183) of medical students participated in PC rotations. Only 25% of participants (46/183) reported assessment of PC knowledge or skills. Gender differences were noted, with women more comfortable discussing prognosis (Pearson Chi-square value 8.67, df 3, p < 0.013) and assessing decision-making capacity (Pearson Chi-square value 15.02, df 3, p < 0.005). Few students expressed comfort with any aspect of PC. The majority of respondents (174/183, 95%) felt that it is important to receive PC education in medical school.ConclusionsMost newly graduated medical students reported limited education in PC, with minimal clinical experience. The vast majority described a lack of comfort in providing care for dying patients and their families. Educational reform is necessary to embed PC knowledge and skills into medical school curricula.

Testing a Pediatric Palliative Care Education Workplace Intervention.

Pediatric palliative care is aimed at pain and symptom management, reducing hospitalization, promoting psychosocial care, and improving quality of life for children with serious illness. As a professional caregiver, nurses play an essential role in the provision of appropriate pediatric palliative care in clinical care settings. The purpose of this quality improvement study was to improve pediatric nurses' awareness and perceptions of palliative care. A 1-group pretest-posttest design was used in the study. A 20-minute education video was used as an intervention to enhance nurses' awareness and perception about pediatric palliative care. Twenty-one pediatric medical-surgical nurses participated in the intervention. Posttest results indicated raised awareness about palliative care, more nurses were able to define palliative care correctly, and nurses were more likely to encourage a palliative care consult. Future studies are needed using larger sample sizes with robust measures to further evaluate the effectiveness of the intervention on enhancing pediatric palliative care awareness among nurses.

Factors Influencing Public Awareness of and Attitudes Toward Palliative Care: A Cross-Sectional Analysis of the 2018 HINTS Data.

BackgroundThe global burden of serious health-related suffering requiring palliative care has been projected to grow significantly by 2060, which indicates the imminent need for integrating palliative care into health systems globally. Moreover, research evidence has been accumulating in support of the earlier adoption of palliative care into the treatment course of serious life-threatening illnesses. However, barriers to earlier access to palliative care still remain, which might be attributable to the global lack of awareness of palliative care and the prevalence of negative perceptions and attitudes. To address this, further investigation of the influencing factors of public perceptions of palliative care is imperative to help inform and develop effective targeted public health campaigns and education messages aimed at improving views of palliative care and thereby early access.MethodsWe used data from the Health Information National Trends Survey (HINTS), a nationally representative cross-sectional survey routinely administrated by the National Cancer Institute from the United States. Specifically, we analyzed the latest palliative care data from HINTS 5 Cycle 2 data set. Sociodemographic characteristics, individual factors such as self-perceived health status, and interpersonal factors such as relationship quality were examined as predictors of public awareness of and attitudes toward palliative care. Survey data were analyzed using SPSS 26 with multiple hierarchical regression tests.ResultsResults showed that people's quality of interpersonal relationships was a significant influencing factor of their awareness of and attitudes toward palliative care. Moreover, cancer diagnosis history and perceived healthcare quality were found to jointly affect their awareness of palliative care; perceived health status and patient centeredness interacted to influence their awareness of and attitudes toward palliative care. Finally, female, non-white, and poorer people were more aware of palliative care, while female and more educated people had more favorable attitudes.ConclusionsThe quality of social relationships emerges as a significant predictor of people's awareness of and attitude toward palliative care, as treatment options and decisions of serious life-threatening illnesses often involve the patients' family. The results hold strong implications for public health campaigns and education messages aiming at changing people's views of palliative care, which ultimately improve end-of-life outcomes.

Patient & Caregiver Experiences: Qualitative Study Comparison Before and After Implementation of Early Palliative Care for Advanced Colorectal Cancer.

The Palliative Care Early and Systematic (PaCES) program implemented an early palliative care pathway for advanced colorectal cancer patients in January 2019, to increase specialist palliative care consultation and palliative homecare referrals more than three months before death. This study aimed to understand the experience of patients with advanced colorectal cancer and family caregivers who received early palliative care supports from a specialist palliative care nurse and compared those experiences with participants who experienced standard oncology care prior to implementation of early palliative care. This was a qualitative and patient-oriented study. We conducted semi-structured telephone interviews with two cohorts of patients with advanced colorectal cancer before and after implementation of an early palliative care pathway. We conducted a thematic analysis of the transcripts guided by a Person-Centred Care Framework. Seven patients living with advanced colorectal cancer and five family caregivers who received early palliative care supports expressed that visits from their early palliative care nurse was helpful, improved their understanding of palliative care, and improved their care. Four main themes shaped their experience of early palliative care: care coordination, perception of palliative care & advance care planning, coping with advanced cancer, and patient and family engagement. These findings were compared with experiences of 15 patients and seven caregivers prior to pathway implementation. An early palliative care pathway can improve advanced cancer care, and improve understanding and acceptance of early palliative care. This work was conducted in the context of colorectal cancer but may have relevance for the care of other advanced cancers.

Awareness and Perceptions of Palliative Care Among the Elderly: A Qualitative Study.

Objectives: With the rapidly aging population worldwide, the demand for palliative care is increasing. Palliative care publicity and education must be further developed globally, especially for the elderly. It is essential to perform targeted promotion by understanding the awareness and needs of palliative care of the elderly. This study aimed to investigate elderly people's awareness of palliative care and their own views on and needs for palliative care, which could provide a basis for the popularization of palliative care among them. Methods: A total of 20 elderly people were recruited to participate in the semi-structured, and in-depth interviews. Participants were from communities and nursing homes in Chongqing, China. The interview transcripts were coded using the method of thematic analysis. Results: Finally, 4 themes and 10 subthemes were identified, that is: unawareness of the concept of palliative care (never heard of palliative care, confusion between euthanasia and palliative care), motivations for accepting palliative care (personal perspective: less suffering; family perspective: relieving the burden), factors influencing palliative care decision (cost of palliative care, knowledge of palliative care, opinion of decision-making agents), and necessity and preferences for publicizing palliative care (eagerness to know more about palliative care, focusing on policy and charges, preference for Electronic Media Advertising). Conclusions: Palliative care publicity among the elderly is important and necessary. Findings in this study could provide some insights into how to popularize palliative care among the elderly. Considering the preference of the elderly for access to palliative care information, simultaneous publicity through TV and online channels is suggested. Since the elderly would like to choose their doctors and adult children as decision-making agents, more communication between community, health professionals and family is advocated.

Experiences of African Americans Living With Sickle Cell Disease.

About 100,000 individuals in the United States live with sickle cell disease (SCD). Palliative care (PC) can improve symptom management for these individuals. The purpose of the study was to explore (a) the experiences of people living with SCD, and (b) their knowledge and perceptions of PC. Using a qualitative, descriptive design, adults with SCD were recruited from a foundation in the southeastern United States. Data included social and SCD-related demographics and audio-recorded, semi-structured focus groups. Analysis took a thematic analysis approach. Participants: There were 16 African Americans who participated in the study, 75% of whom were females, and aged 22 to 71 years. Five themes were identified: unique and unpredictable impact of SCD on daily life, the changing experience of SCD over time, stigmatization/marginalization in health care interactions, perceptions of support in managing SCD symptoms/crises, and PC: "What is it?" Participants lacked PC knowledge. PC should be offered to individuals with SCD as part of comprehensive SCD management.

The lived experience of patients suffering from stroke and their perception of palliative care needs: a literature review

PurposeThis study aims to review the lived experience of patients suffering from stroke and describe their perception of palliative care needs.Design/methodology/approachA literature review search was conducted. Web of Sciences, SAGE, CINAHL, PubMed and Jordanian Database for Nursing Research databases were used to search the literature.FindingsThe findings of 37 articles were address palliative care approaches for patients with stroke, lived experiences of patients suffering from stroke and the experience, barriers and facilitators related to health-care service for stroke survivors.Originality/valueThis review indicated the importance of recognizing palliative care needs among patients suffering from stroke to improve post-stroke recovery. This study recommends further research, especially in low- and middle-income countries, to understand patients’ experiences and recognize the main palliative care needs that can be incorporated into interventions designed to improve the quality of life among them.

Palliative care physicians' preparation and planning for the implementation of the Voluntary Assisted Dying Act in Victoria.

In November 2017, the Victorian Voluntary Assisted Dying (VAD) Act was passed enabling people with a progressive terminal illness to end their life voluntarily. Heated debate abounded including, to some extent within palliative care, which was also challenged with developing processes around the legislation enactment. In response, the lead author convened a series of meetings of palliative care physicians to: (i) share ideas about preparations being undertaken within services; and (ii) re-establish professional cohesion following the divide that the legislation had presented. A series of three closed meetings were held between the legislation passage and its implementation, with all Victorian palliative care physicians invited to attend. Meetings were facilitated by an experienced psychiatrist from outside the field. These meetings proved very valuable as physicians collectively sought to define and respond to challenges, simultaneously reflecting on the personal and professional implications for individuals and the field. Key areas raised including gauging institutional 'readiness' for the legislation through staff surveys; the educational role of palliative care staff of the legislation implications; communication skills training; the role (if any) of palliative care in the processes of VAD; and the perceptions of palliative care itself in health services and the community. It was during the processes of discussing challenges and sharing solutions that the attendees appeared to reaffirm their professional interconnections. A description of the key elements of these discussions may be useful to others who may yet face similar circumstances with the introduction of VAD legislation.

Neonatal Nurses' Perceptions of Palliative Care in the Neonatal Intensive Care Unit.

Neonatal palliative care is widely endorsed as an essential aspect of neonatal intensive care unit (NICU) practice, yet inconsistencies in its use continue to exist. We examined neonatal nurses' perceptions of barriers and facilitators to palliative care in their NICU setting. A cross-sectional design using the Neonatal Palliative Care Attitude Scale (NiPCAS™©) was administered using an online survey distributed to neonatal nurses through the Association of Women's Health, Obstetric and Neonatal Nurses (AWHONN) and National Association of Neonatal Nurses (NANN). Parametric statistical analyses were conducted to explore relationships between unit policy and neonatal palliative care (NPC) education, and the nurses' perceptions. Ninety-nine of 1,800 AWHONN members who identified as NICU nurses completed the survey, representing a response rate of 5.5% and 101 of 4,000 NANN members who subscribe to the MYNANN message boards completed the survey, reflecting a 2.5% response rate. N = 200 surveys were completed with minimal data missing, resulting in a final sample of 200. Exploratory factor analysis yielded these subconstructs: Unit Culture, Resources, and Perceived Inappropriate Care. Barriers identified were Perceived Inappropriate Care and Societal Understanding of NPC. A positive correlation was noted for NiPCAS™© scores and unit culture support (r(185) = .66, n = 187, p < .01), unit NPC policy (r(184) = .446, n = 186, p < .01), and NPC education (r(185) = .373, n = 187, p < .01). Nurses who work in a NICU with an NPC policy and who have received palliative care education demonstrated more favorable attitudes toward NPC. Policy and educational programs are important strategies to promote high-quality care for high-risk infants and their families.

Neonatal Nurses' Perceptions of Palliative Care in the Neonatal Intensive Care Unit.

MCN, The American Journal of Maternal/Child Nursing: September/October 2021 - Volume 46 - Issue 5 - p E10 doi: 10.1097/NMC.0000000000000759

"When I Heard the Word Palliative": Obscuring and Clarifying Factors Affecting the Stigma Around Palliative Care Referral in Oncology.

Palliative care (PC) can help patients with cancer manage symptoms and achieve a greater quality of life. However, there are many barriers to patients with cancer receiving referrals to PC, including the stigmatizing association of PC with end of life. This study explores factors that obscure or clarify the stigma around PC referrals and its associations with end of life in cancer care. A qualitative descriptive design using grounded theory components was designed to investigate barriers to PC referrals for patients receiving treatment at an outpatient cancer center. Interviews with patients, caregivers, and oncology professionals were audio-recorded, transcribed, and independently coded by three investigators to ensure rigor. Participants were asked about their perceptions of PC and PC referral experiences. Interviews with 44 participants revealed both obscuring and clarifying factors surrounding the association of PC as end of life. Prognostic uncertainty, confusion about PC's role, and social network influence all perpetuated an inaccurate and stigmatizing association of PC with end of life. Contrarily, familiarity with PC, prognostic confidence, and clear referral communication helped delineate PC as distinct from end of life. To reduce the stigmatizing association of PC with end of life, referring clinicians should clearly communicate prognosis, PC's role, and the reason for referral within the context of each patient and his or her unique cancer trajectory. The oncology team plays a vital role in framing the messaging surrounding referrals to PC.

Health professionals\u2019 perceptions of palliative care for end-stage cardiac and respiratory conditions: a qualitative interview study

BackgroundEnd-stage cardiac and respiratory diseases are common in the UK. People with these end-stage conditions experience similar, or even worse, symptomatic suffering to cancer patients but are less likely to receive specialist palliative care services. The objective of this study is to explore health professional perceptions and current practices in relation to specialist palliative care for patients with end-stage cardiac and respiratory disease.MethodsQualitative study using in-depth interviews with health professionals, audio recorded and transcribed verbatim for thematic analysis. The study was conducted with doctors and nurses from cardiology, respiratory, and palliative care specialities in the UK. The participants had to be involved clinically in providing care to people with end-stage cardiac or respiratory diseases.ResultsA total of 16 health professionals participated (5 cardiology, 5 respiratory, and 6 palliative care). Participants reported variable disease trajectories in these diseases making deciding on timing of palliative care involvement difficult. This was complicated by lack of advance care planning discussions, attributed to poor communication, and lack of health professional time and confidence. Participants reported poor interdepartmental education and limited specialist palliative care involvement in multidisciplinary teams.ConclusionsPalliative care for end-stage cardiac and respiratory diseases needs more attention in research and practice. Better integration of advance care planning discussions and early patient education/professional awareness are needed to enable timely referral to palliative care. Moreover, increased interdepartmental working for health professionals via joint educational and clinical meetings is perceived as likely to support earlier and increased referral to specialist palliative care services.

Perceptions of healthcare professionals towards palliative care in internal medicine wards: a cross-sectional survey

BackgroundThe extension of palliative care services to meet the needs of patients with chronic non-malignant life-limiting conditions faces misconceptions amongst healthcare professionals. A study of prevailing perceptions of healthcare professionals on this wider palliative care service was thus conducted to identify current obstacles, guide the education of local healthcare professionals and improve service accessibility.MethodsA cross-sectional study was carried out at the Singapore General Hospital. An anonymised and close-ended online questionnaire was disseminated to 120 physicians and 500 nurses in the Department of Internal Medicine. The online survey tool focused on participant demographics; perceptions of palliative care and its perceived benefits; roles and indications; and attitudes and behaviours towards palliative care referrals.ResultsForty four physicians and 156 nurses suggested that care of terminally ill patients with chronic non-malignant life-limiting conditions are compromised by concerns over the role of palliative care in non-cancer care and lapses in their prognostication and communication skills. Respondents also raised concerns about their ability to confront sociocultural issues and introduce palliative care services to patients and their families.ConclusionsGaps in understanding and the ability of nurses and physicians to communicate end of life issues, introduce palliative care services to patients and their families and confront sociocultural issues suggest the need for a longitudinal training program. With similar concerns likely prevalent in other clinical settings within this island nation, a concerted national education program targeting obstacles surrounding effective palliative care should be considered.

Cuidados paliativos: Conhecimento de acadêmicos da saúde

Objetivo: descrever os saberes dos acadêmicos da área da saúde sobre cuidados paliativos (CP), além de analisar dados acerca da percepção dos acadêmicos sobre cuidados paliativos. Metodologia: Estudo exploratório descritivo de abordagem quantitativa, realizados com discentes dos cursos de Enfermagem, Farmácia, Fisioterapia, Fonoaudiologia, Medicina, Nutrição, Odontologia e Terapia Ocupacional; matriculado a partir do 3º ciclo/ano da graduação; que aceitaram participar da pesquisa. Resultados: A amostra foi composta por 254 acadêmicos, tendo como maioria público do sexo feminino (65,8%). Quanto ao ciclo, 49,2% eram do ciclo III, 29,5% ciclo IV, 17,0% ciclo V; 4,3% ciclo VI. Quase todos os participantes (98,4%) referiram ser muito importante ou importante disciplina sobre CP durante a graduação. Mais de 60% dos acadêmicos associaram os CP paliativos como qualquer medida com intuito curativo, indo de encontro ao que propõe os conceitos/filosofia dos CP. Conclusão: Evidencia-se o quanto é importante a abordagem sobre CP na grade curricular, porém, também fica evidente a lacuna ainda existente nos cursos de graduação pesquisados. Faz-se necessário a inclusão de disciplinas específicas e ações extracurriculares sobre a temática nas grades curriculares dos cursos da área da saúde.