BACKGROUND: Palliative care is aimed at improving the quality of life of an individual with chronic noncommunicable disease and their care partners. Limitations in the provision of palliative care are mainly lack of knowledge and experience by nurses, fear of treating palliative persons, loss of control over treatment and fear of providing poor-quality palliative care to persons and care partners.
AIM: The aim of this study was to investigate the perception, knowledge and attitudes of palliative care by nurses who use palliative care approaches in practice, as well as the difference in perception, knowledge and attitudes of palliative care between nurses in Slovenia and Finland.
METHODS: We conducted a cross-sectional descriptive study. The survey included 440 nurses in clinical environments in Slovenia and Finland with a completed bachelor, master or doctoral level of education.
RESULTS: We found statistically significant differences between both countries in the perception of palliative care. Differences between the two countries in the knowledge of palliative care were not confirmed. We confirmed statistically significant differences between both countries in the attitudes of palliative nursing care.
CONCLUSION: Early person-centred palliative care is an important part of the holistic and integrative treatment of a person who has a disease with disturbing symptoms. For such an approach, it is important to educate nurses about knowledge, expectations, values and beliefs in developing a concept of person-centred palliative care to improve quality of life. The better perception, knowledge and attitudes of palliative care by nurses may help persons to improve and raise their quality of life, as well as diminish stress in their care partners and improve quality of life.
BACKGROUND: Research on nurses' perceptions of dignity is limited, with much work instead focusing on patients' experiences. Maintaining the dignity of patients is considered to be an important element of nursing care; however, it is often diminished by the acts and omissions of healthcare providers.
OBJECTIVES: The purposes of this study were to understand oncology nurses' perceptions of care that supports patients' dignity during end-of-life hospitalization and to propose a theoretical foundation consistent with these perceptions as a guide to practice.
METHODS: A qualitative study using grounded theory was employed. Semistructured interviews with 11 experienced female oncology nurses generated insights into their perceptions of dignity in caring for terminally ill patients. Data were analyzed using the constant comparative method until data saturation was reached.
FINDINGS: This study revealed an emerging model for dignity care that uses communication, support, and facilitation in the education of nurses during end-of-life care. The proposed model could enhance the facilitation of nursing education and aid in the design of nursing course curricula and practical experiences that may improve nurses' ability to provide care supporting dignity.
Introduction: This study assessed the views of nurses, resident doctors, and attending physicians of the use of a readily available pain and palliative care specialty at their institution while assessing their ability to recognize terminal noncancer illnesses.
Methodology: In community hospital consisting of an in-patient pain and palliative specialty, attending physicians, residents, and nurses participate in a survey highlighting the following: parameters for referral/consultation, definition of noncancer-related terminal illnesses, role of pain and palliative care in acute care, consult/referral delay, barriers to effective referral, recognition and withdrawal of futile care, and opioid prescription. Patterns of responses by each professional group were compared and contrasted.
Results: The most common accepted reasons for referral were that of hospice care, terminal cancer, and uncontrolled pain, while reasons related to terminal noncancer illnesses were less accepted. A majority of approved physical and social parameters to define terminal noncancer illnesses were not universally accepted among the groups-especially among attendings and residents. While most participants agreed that the best time to refer to palliative care specialty was at the point of diagnosis of a terminal illness, >25% of participants from each group felt that referrals should be done later in the course of the illness. The most highlighted reasons expressed by attendings and residents for the delay in consult were either that of excessive withdrawal of modalities of care or interference with ongoing management that may benefit the patient. Most residents and nurses agreed that attendings' reluctance to consult is a major barrier to its utilization.
Conclusion: Barriers to effective utilization are multifactorial, mostly relating to perceptions of the specialty as well as ineffective communication within specialties.
Objective: To determine perceptions of Jordanian critical care staff about obstacles and facilitators to end-of-life care.
Research methodology: The “National Survey of Critical Care Nurses’ Perceptions of End-of-Life Care” was adapted and distributed to 143 critical care nurses (n = 110) and physicians (n = 33) in two Jordanian hospitals. Nurses and physicians completed items about perceived obstacles to end-of-life care. Nurses only completed items about facilitators to end-of-life care.
Results: The overall response rate was 72.7% (n = 104/143). Seventy–six nurses (69.1%) and 28 physicians (84.5%) responded. Nurses and physicians agreed that the highest scoring obstacles were: ‘family members who do not understand what life-saving measures mean’ and the ‘poor design of critical care units’. Other highly scoring obstacles related to clinicians’ behaviours, characteristics and attitudes. Nurses perceived the highest scoring facilitator was ‘family members who accepted that the patient was dying’.
Conclusion: There is a need to further explore the issues underlying perceptions about clinicians’ behaviours, which were perceived to be key barriers to quality end-of-life care and to find acceptable solutions that fit with Islamic culture. It is the first time that the survey has been used to gather perceptions of doctors and nurses in a non-western culture.
OBJECTIVE: To increase knowledge of how doctors perceive futile treatments and scarcity of resources at the end of life. In particular, their perceptions about whether and how resource limitations influence end-of-life decision making. This study builds on previous work that found some doctors include resource limitations in their understanding of the concept of futility.
SETTING: Three tertiary hospitals in metropolitan Brisbane, Australia.
DESIGN: Qualitative study using in-depth, semistructured, face-to-face interviews. Ninety-six doctors were interviewed in 11 medical specialties. Transcripts of the interviews were analysed using thematic analysis.
RESULTS: Doctors' perceptions of whether resource limitations were relevant to their practice varied, and doctors were more comfortable with explicit rather than implicit rationing. Several doctors incorporated resource limitations into their definition of futility. For some, availability of resources was one factor of many in assessing futility, secondary to patient considerations, but a few doctors indicated that the concept of futility concealed rationing. Doctors experienced moral distress due to the resource implications of providing futile treatment and the lack of administrative supports for bedside rationing.
CONCLUSIONS: Doctors' ability to distinguish between futility and rationing would be enhanced through regulatory support for explicit rationing and strategies to support doctors' role in rationing at the bedside. Medical policies should address the distinction between resource limitations and futility to promote legitimacy in end-of-life decision making.
OBJECTIVES: Several barriers have been identified as preventing or delaying access to children's palliative care services. The aim of this study is to further explore such barriers from palliative care professionals' perspective from two London boroughs.
METHODS: Qualitative-five children's palliative care professionals' perceptions were obtained from semi-structured interviews.
RESULTS: Three themes emerged: availability and adequacy of child palliative care (e.g., unreliability of services), obstacles to accessing palliative care (e.g., logistical challenges), and cultural values and family priorities.
CONCLUSION: These findings contribute to the equal opportunities dialogue in this sector and the need for future research to address the challenges identified.
PURPOSE: Though provider and patient perceptions of death are characterized in the adult population literature, there is limited information related to providers' perceptions in pediatric and neonatal patients. The purpose of this study was to better understand how interprofessional care team members perceive and experience neonatal and pediatric end-of-life situations.
DESIGN AND METHODS: This survey questionnaire was administered to interprofessional providers following their participation in an institutional workshop, as part of an ongoing institutional effort to improve end-of-life experiences for patients/family and providers. Interprofessional care providers completed an electronic survey consisting of closed-ended and one open-ended question to elicit their perceptions of their participation in end of life care for a recent neonatal/pediatric patient in the period before the child's death.
RESULTS: The qualitative analysis of 306 free-text responses commenting on the deaths of 138 patients, contained within 880 completed mixed-method surveys, is described. Thematic analysis of the free text discovered three primary themes from the data: favorable aspects of the death experience, unfavorable aspects of the experience, and combined favorable and unfavorable aspects. Four subthemes contributed to the themes; namely, language, parental presence, trust/rapport in provider relationships and inclusion in decision-making, communication, and culture.
CONCLUSIONS: Multiple factors contribute to how interprofessional care providers perceive end-of-life care experiences for neonatal/pediatric patients. The same death may be perceived differently by different providers.
PRACTICE IMPLICATIONS: Understanding favorable and unfavorable aspects of providing end-of-life care will support strategies to provide resources, education and support to facilitate coping and resiliency in care providers.
This essay presents an account of the influence of the researcher's body within qualitative death research. It suggests that appropriate reflection on the researcher's subjectivity should consider his or her own bodily performances and experiences. At the beginning I offer some introductory thoughts in this regard, referring to Plessner's distinction between 'being a body' (Körper-haben) and 'having a body' (Leib-sein). Here, I highlight the importance of autoethnographic approaches for the understanding of bodily experiences, such as sensations, perceptions and their aesthetics. To demonstrate the importance of considering the researcher's body within the research process, I then draw on my own autoethnographic material, discussing how I experienced in my body frightening and disturbing feelings while dealing with the dead. This material was collected during a six-month internship from April to September 2016 at a small funeral home in Thuringia, Germany. I explain how I was socialised regarding my bodily behaviour towards the dead years ago and how I acquired the knowledge that touching a corpse is often taboo; describe my bodily reactions when I saw a dead body for the first time during my internship and how these reactions influenced my fieldwork; relate how my senses and perceptions when first touching a corpse led to extreme responses that drew most of my attention to the haptic and sensual dimension, making me unable to notice other information in the field; and show how these bodily experiences crossed borders and influenced my life beyond my field research.
This article investigates children's views on providing peer support to bereaved children. The data (pre- and postinterviews and written documents) come from an action research study of a teacher-researcher and her 16 children aged 10-11 years old. Analysis of the data shows children's ideas on supporting a bereaved child and how this support should be provided, taking into consideration various factors such as the relationship with the bereaved and the role of memories. The paper emphasizes that children should have structured opportunities across the whole-school curriculum to learn how loss affects people's lives to support themselves and others.
It is important for the health care community to understand the impact of a child's death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child's end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least "a little benefit" and half reported at least "a little burden" associated with participation. Less burden was perceived by younger and female parents, parents of younger children, those who had felt prepared to meet their children's emotional needs at EoL, and those not using bereavement services at the time of the survey. With the increasing use of social media as a source for bereaved parents to receive and provide emotional support, it is important for clinicians and researchers to understand the perceived benefits and risks of participating in research about EoL experiences via online recruitment. Our findings suggest that the benefit and burden of online research participation may vary for bereaved parents, but further research is necessary to replicate the findings and explore ways to optimize the use of this approach.
Background: Legal concerns have been implicated in the occurrence of variability in decisions of limitations of medical treatment (LOMT) before death.
Objective: We aimed to assess differences in perceptions between physicians and prosecutors toward LOMT.
Measurements: We sent a survey to intensivists, oncologists, and prosecutors from Brazil, from February 2018 to May 2018. Respondents rated the degree of agreement with withholding or withdrawal of therapies in four different vignettes portraying a patient with terminal lung cancer. We measured the difference in agreement between respondents.
Results: There were 748 respondents, with 522 (69.8%) intensivists, 106 (14.2%) oncologists, and 120 (16%) prosecutors. Most respondents agreed with withhold of chemotherapy (95.2%), withhold of mechanical ventilation (MV) (90.2%), and withdrawal of MV (78.4%), but most (75%) disagreed with withdrawal of MV without surrogate's consent. Prosecutors were less likely than intensivists and oncologists to agree with withhold of chemotherapy (95.7% vs. 99.2% vs. 100%, respectively, p < 0.001) and withhold of MV (82.4% vs. 98.3% vs. 97.9%, respectively, p < 0.001), whereas intensivists were more likely to agree with withdrawal of MV than oncologists (87.1% vs. 76.1%, p = 0.002). Moreover, prosecutors were more likely to agree with withholding of active cancer treatment than with withholding of MV [difference (95% confidence interval, CI) = 13.2% (5.2 to 21.6), p = 0.001], whereas physicians were more likely to agree with withholding than with withdrawal of MV [difference (95% CI) = 10.9% (7.8 to 14), p < 0.001].
Conclusions: This study found differences and agreements in perceptions toward LOMT between prosecutors, intensivists, and oncologists, which may inform the discourse aimed at improving end-of-life decisions.
Background: Learning palliative care is challenging for nursing students. Simulation is recommended as a learning approach. Whether experiences from simulation transfer into clinical practice must be investigated.
Objective: The aim of this study was to explore nursing students' experiences of participating in palliative care simulation and examine how they describe the perceived transfer of knowledge, skills, and competence into clinical practise.
Method: This prospective, qualitative study was comprised of 11 in-depth interviews with second-year bachelor nursing students. Content analysis was performed to analyse the answers to open-ended questions.
Results: From this sample, simulation is a preferred method to gather knowledge, skills, and attitudes towards palliative care. Realistic cases stimulated senses and feelings. Courage grew through active participation and debriefing and influenced the students' self-confidence. Debriefing seemed to alter the situation from one of chaos to control.
Conclusions: Experiences from the simulation were perceived to transfer to practice, serve as a sound basis for clinical judgement, and enable communication with patients and their relatives. Continuity in learning through simulation combined with practice is highlighted.
BACKGROUND: Assisted dying and continuous deep sedation (CDS) are controversial practices. Little is known about the perceptions of physicians and surrogates about these practices for patients with advanced dementia.
OBJECTIVES: To describe and compare physician and surrogate agreement with the use of assisted dying and CDS in advanced dementia.
DESIGN, SETTING, SUBJECTS: Physicians (n = 64) and surrogates (n = 168) of persons with advanced dementia were recruited as part of a randomized controlled trial in Switzerland that tested decision support tools in this population.
METHODS: At baseline, the participants were asked about their agreement with assisted dying and CDS in advanced dementia using the following response options: "completely agree," "somewhat agree," "somewhat disagree," "completely disagree," and "do not know." Multivariable logistic regressions compared the likelihood that surrogates versus physicians would completely or somewhat agree (vs. completely or somewhat disagree) with these practices.
RESULTS: The physicians and surrogates, respectively, had a mean age (SD) of 50.6 years (9.9) and 57.4 years (14.6); 46.9% (n = 30/64) and 68.9% (n = 115/167) were women. A total of 20.3% (n = 13/64) of the physicians and 47.0% (n = 79/168) of the surrogates agreed with assisted dying in advanced dementia. Surrogates were significantly more likely to agree with this practice than physicians (adjusted odds ratio, 3.87; 95% CI: 1.94, 7.69). With regard to CDS, 51.6% (n = 33/64) of the physicians and 41.9% (n = 70/169) of the surrogates agreed with this practice, which did not differ significantly between the groups.
CONCLUSIONS: The surrogates were more agreeable to considering assisted dying in the setting of advanced dementia than the physicians, and about half of the participants in both groups reported CDS to be an appropriate option for this population.
OBJECTIVE: Despite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S. family caregivers and describe demographic variation in awareness and perceptions of palliative care.
METHOD: Using the 2018 National Cancer Institute Health Information National Trends Survey, we identified unpaid family caregivers caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term "palliative care" and, if aware, how much they agreed with statements representing common (mis)perceptions about palliative care (e.g., "Palliative care is the same as hospice"). Result: More than one-half of caregivers (55%) had "never heard" of palliative care; 19.2% knew what palliative care was and "could explain it to someone else." In adjusted models, racial minorities (vs. whites) and those without a college degree were less likely to have heard of palliative care. Among those aware of palliative care, ~40% "strongly" or "somewhat" agreed that "Palliative care is the same as hospice"; another 10.5% "didn't know." Similarly, 40% reported that "When I think of palliative care, I automatically think of death."
SIGNIFICANCE OF RESULTS : One-half of family caregivers of adults with serious chronic illness have never heard of palliative care. Even among those who had heard of palliative care, the majority do not distinguish it from hospice care and death. Given the role family caregivers may play in decisions to access palliative care, public messaging efforts are needed to clarify palliative care services in a way that is patient- and family-centered.
Advanced care planning (ACP) and end-of-life discussions are especially difficult among persons living with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) as a result of patients' lack of trust in family and providers, HIV-related stigma, misunderstood spirituality concerns, social isolation, and other factors. Previous research has demonstrated that relatively few persons living with HIV/AIDS engage in ACP, yet developing culturally sensitive methods of ACP is imperative. One such method is digital storytelling, a video narrative that can be used to share ideas or aspects of a life story.
The aim of this study was to examine perspectives from providers and persons living with HIV/AIDS about the acceptability, benefits, and technological challenges of and barriers to using digital storytelling for ACP. A qualitative descriptive design was employed using focus groups of 21 participants in South Central Appalachia. Transcribed data were analyzed using qualitative content analysis. Findings revealed patient and provider ideas about ACP, factors related to digital story acceptability, stigma against persons living with HIV/AIDS, and concern for the legality of ACPs expressed in digital story format. Future research should focus on the process of creating digital stories as an intervention to improve ACP in this unique aggregate.
OBJECTIVES: Recent evidence suggests that music therapy, a holistic method of care, potentially is beneficial for symptom management. This quality improvement project aimed to evaluate the effect of music therapy on symptom management and coping skills of patients receiving palliative care and to measure patient satisfaction with the therapy. A secondary aim was to evaluate staff perception of patient outcomes of music therapy services.
METHODS: Palliative care clinicians attended a 30-minute education session on music therapy before the project was initiated. Study participants were patients and their families who were cared for by the inpatient palliative care consulting service at Mayo Clinic (Rochester, Minnesota) from June 1 through December 31, 2016. Patients were eligible if they required ongoing management of pain and anxiety or needed adaptive coping strategies. Patients and families were asked to complete a survey after each music therapy session. Staff were asked to complete a survey after completion of the project.
RESULTS:: Music therapy was provided to 57 patients and 53 family members. Patient surveys indicated a decrease in anxiety and pain. All patients reported that music therapy facilitated stress relief, relaxation, pain relief, spiritual support, emotional support, and a general feeling of wellness. All participants recommended music therapy services for others. Palliative care clinicians reported that music therapy added value as a holistic service.
CONCLUSIONS:: In this quality improvement project, music therapy positively affected multiple domains of well-being for patients receiving palliative care.
BACKGROUND & AIMS: Despite evidence for the benefits of palliative care (PC) referrals and early advance care planning (ACP) discussions for patients with chronic diseases, patients with end-stage liver disease (ESLD) often do not receive such care. We sought to examine physicians' perceptions of the barriers to PC and timely ACP discussions for patients with ESLD.
METHODS: We conducted a cross-sectional survey of hepatologists and gastroenterologists who provide care to adult patients with ESLD, recruited from the American Association for the Study of Liver Diseases 2018 membership registry. Using a questionnaire adapted from prior studies, we assessed physicians' perceptions of barriers to PC use and timely ACP discussions; 396 of 1236 eligible physicians (32%) completed the questionnaire.
RESULTS: The most commonly cited barriers to PC use were cultural factors that affect perception of PC (by 95% of respondents), unrealistic expectations from patients about their prognosis (by 93% of respondents), and competing demands for clinicians' time (by 91% of respondents). Most respondents (81%) thought that ACP discussions with patients who have ESLD typically occur too late in the course of illness. The most commonly cited barriers to timely ACP discussions were insufficient communication between clinicians and families about goals of care (by 84% of respondents) and insufficient cultural competency training about end-of-life care (81%).
CONCLUSION: There are substantial barriers to use of PC and timely discussions about ACP-most hepatologists and gastroenterologists believe that ACP occurs too late for patients with ESLD. Strategies are needed to overcome barriers and increase delivery of high-quality palliative and end-of-life care to patients with ESLD.
OBJECTIVES: Early 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 level of distress, continue to have less access to palliative care services. The aim of this study was to identify haematologists' perceptions of palliative care, as well as barriers to patient referral.
METHODS: We used a qualitative grounded theory methodology. Twenty-four medical haematologists involved in clinical practice from two French centres in Lyon-the Lyon Sud University Hospital and the Léon Bérard Cancer Center-were included. The interview guide questions aimed to establish the clinical situations which triggered referral to palliative care and how participants perceived palliative care.
RESULTS: Data saturation was reached after 14 interviews. The data analysis highlighted four themes. The aim of palliative care was clearly identified as alleviating severe suffering. Palliative care was identified as a separate specialty, and respondents expressed the need for collaboration. Early intervention was perceived as beneficial to avoid certain situations such as hospitalisation or emergency department visits at the end of life. The main barrier to palliative care referral remained the negative connotations associated with the term 'palliative', which was overwhelmingly associated with the end of life.
SIGNIFICANCE OF RESULTS: Our results suggest that the principal barrier to palliative care referral is the term 'palliative care'; haematologists would prefer 'supportive care' instead.
OBJECTIVE: To compare perceptions of various aspects of palliative care for doctors and nurses; and examine factors contributing to perceived quality palliative care in intensive care units (ICUs).
DESIGN: A cross-sectional survey study conducted from November to December 2013. Questionnaires used were Knowledge, Attitudinal and Experiential Survey on Advance Directives (ADs), Clarke's Quality of Palliative Care and Nurses' Participation in the end-of-life (EOL) decision-making process.
SETTING: Seven adult medical and surgical ICUs at a medical center in Northern Taiwan.
PARTICIPANTS: In total, 172 doctors and nurses who worked in adult ICU for more than 3 months.
MAIN OUTCOME MEASURES: Nurses' and doctors' perception of quality palliative care.
RESULTS: Nurses provided better care than doctors in symptom management, comfort care and spiritual care; their participation in EOL decision-making was the sole modifiable contributor to perceived quality palliative care in ICUs (ß = 0.24, P < 0.01). Both doctors and nurses had positive attitudes towards ADs (mean = 4.05/10; standard deviation [SD] = 1.38) while their knowledge of ADs was poor (mean = 29.72/40; SD = 3.00). More than half of nurses currently participated in EOL decision-making and over 80% of doctors and nurses agreed both parties should engage in EOL decision-making process. Majority of doctors (83.9%) reckoned nurses agreed with their EOL decisions while a significant percentage (40%) of nurses were uncertain about doctors’ decisions ( 2 = 12.07, P < 0.01).
CONCLUSIONS: Nurses' participation in EOL decision-making and strengthening spiritual care are imperative to rendering quality palliative care in ICUs. Potential disagreements arose during EOL decision-making between doctors and nurses; and insufficient knowledge of ADs should be addressed.
BACKGROUND: Few studies exist regarding the perception of medical students toward older adults' wishes during their end-of-life period. Better understanding of students' perceptions regarding this topic could help improve palliative education. The purposes of this study were to examine the perceptions of medical students regarding what constitutes a "good death" and to demonstrate the factors associated with the necessary care decisions in older patients.
METHODS: This is a cross-sectional study. A questionnaire was developed and given to all of the medical students at two medical schools in Thailand (Siriraj and Srinagarind Hospital) from September 2017 to February 2018. They were asked to response to the questions by imagining how older people would think, and their preferences regarding care at the end-of-life period. The anonymous questionnaires were collected and analyzed.
RESULTS: A total of 1029 out of 2990 surveys were returned (34.4%). A minority of the sixth-year medical students rated themselves as being knowledgeable about palliative care (11.3%). According to the survey, desire to have spiritual needs met and have their loved ones present were the most important conditions that contributed to a "good death". Factors associated with reluctance to receive prolonged treatment were female sex (adjusted odds ratio (AOR 1.39), being in the clinical years of training (AOR 1.92), self-rated good health (AOR 1.45), and prior experience of watching someone dying (AOR 1.61). Enrollment in Srinagarind medical school (AOR 2.05), being a clinical student (AOR1.91), and being dissatisfied with life (AOR 1.78) were independent factors related to preference for home death.
CONCLUSIONS: Most medical students signified understanding of concepts of geriatric palliative care but felt that they had insufficient knowledge in this area. Multiple factors related to decision regarding the care that was required were identified. Medical schools should consider this information to improve geriatric palliative medical education in undergraduate training.