Dans nos sociétés occidentales le renforcement de la valeur d’autonomie a pris corps à travers différentes dispositions législatives, dont la possibilité de rédiger des directives anticipées. Leur mise en œuvre questionne les professionnels de santé.
Objectif: L'objectif principal de ce travail était de recueillir la perception pluridisciplinaire de soignants, puis, secondairement, de décrire leur pratique d’information et d’aide à la rédaction des directives anticipées.
Méthode: Cette enquête est à visée prospective. Un questionnaire a été remis un jour donné à la promotion 2016/2017 d’un diplôme inter-universitaire en soins palliatifs (DIUSP). Le questionnaire se composait de dix questions fermées, 12 questions ouvertes et un encadré libre.
Résultats: Le sentiment des professionnels de santé était hétérogène, 56,3 % se disaient à l’aise, 44 % d’avis partagé. Plusieurs moments sont cités pour présenter les directives anticipées. Sur la forme, 25 % des répondants pensaient qu’allier un modèle type avec des zones de texte libre permet d’engager un dialogue patient soignant. Les psychologues considéraient que les directives anticipées ne doivent servir qu’à transmettre des informations médicales. Si la plupart des répondants ont délivré des informations sur les directives anticipées, 81,3 % n’ont jamais accompagné de patient pour leur rédaction et 57,1 % n’ont pas eu à les utiliser. Leur valeur opposable est adéquate pour 56,3 % des répondants.
Conclusion: La perception des directives anticipées est favorable, mais leur appropriation par des professionnels de santé sensibilisés à la démarche palliative reste délicate. Des difficultés ressortent telles qu’aborder le sujet de la fin de vie, trouver le temps nécessaire pour échanger avec les personnes qui souhaitent en rédiger.
PURPOSE: The purpose of this study was to explore the perceptions of critical care nurses regarding the withdrawal or withholding of enteral nutrition (EN) and parenteral nutrition (PN) at the end-of-life, which is not allowed according to the current law in South Korea.
METHODS: This was a cross-sectional study utilizing a self-report survey. The participants in the study were 141 nurses working in the intensive care units of a tertiary university hospital. The critical care nurses' general attitudes about EN and PN at the end-of-life were measured using the questionnaires developed by Lubart, Leibovitz, and Habot. The nurses responded to additional questions on whether withdrawal or withholding of EN or PN at the end-of-life should be legally allowed.
RESULTS: The mean scores of the general attitude items on EN ranged between 3.03 and 3.35 on a 5-point Likert scale where a value of 1 represents "strongly disagree" and a value of 5 represents "strongly agree," while those for PN ranged between 2.89 and 3.65. Respecting attitudes toward EN and PN, critical care nurses had more negative attitudes about stopping PN than EN. Regarding attitudes about whether patients should be legally able to refuse EN, 34.3% agreed, while 25.7% disagreed. For PN, 40.0% agreed, while 24.3% disagreed.
CONCLUSION: Discussions about making the withdrawal and withholding of artificial nutrition legal should be initiated. Moreover, education regarding evidence about the outcomes of EN and PN during end-of-life care and up-to-date clinical guidelines about it should be provided.
The studies on terminally ill patients' dignity as perceived by health care providers (HCPs) in palliative care are growing. The comparison of different HCPs' perspectives in particular is necessary to explore how HCPs perceive patients' dignity in order to promote reflection on this core issue. This study aimed to investigate the perspectives on end-of-life patients' sense of dignity among four different categories of professionals: nurse assistants, nurses, psychologists, and physicians. A sample of 306 HCPs completed the Patient Dignity Inventory-Italian Version (PDI-IT) adapted for them and an ad hoc semi-structured written interview. Their responses were then analyzed using frequencies of the answers to the PDI-IT, a multivariate analysis of variance, Pearson's correlation index, t tests, and content analysis. All HCPs scored the relevance to the dignity-related physical aspects highly, followed by the psychological distress. Nurse assistants and nurses provided higher scores on the psychological and existential and spiritual PDI subscales than the other HCP groups. The social sphere was evaluated as the least salient for the patients' sense of dignity. Physicians who attended a course on dignity considered the psychological and existential dignity dimensions more. Differences in role and expertise could lead to different HCPs' perspectives on dignity, while the multidisciplinary work could favor their aligning. Therefore, it is essential to encourage HCPs' communicative exchange and reflective awareness through training, i.e., courses, seminars, and focus groups. These developments could promote increasingly adequate patient-centered care.
Nurses play an integral role in high-quality patient care. Thus, their skills in providing end-of-life care should be assessed and continually enhanced. Education intended to improve end-of-life skills must address the affective/emotional component of nursing care. Evidence demonstrates that emotional engagement and resilience among health care providers are correlated with improved quality outcomes and, conversely, that burnout and stress negatively affect patient safety. Addressing the emotional needs of health care providers is critical to improving quality throughout the health care system. An evidence-based workshop was implemented among direct care staff on a hospital-based palliative care unit, with the goal of fostering emotional engagement to improve staff perceptions and attitudes about caring for patients at or near the end of life. Although perceptions about quality of death were not affected by this intervention, there was a significant improvement in attitudes about end-of-life nursing care. Qualitative feedback also reflected appreciation for small group discussions and opportunities to debrief with peers away from the unit. This intervention reflected the value of emotional engagement in educational efforts to improve end-of-life nursing care.
OBJECTIVES: To develop an enhanced understanding of factors that influence providers' views about end-of-life care, we examined the contributions of provider, hospital, and country to variability in agreement with consensus statements about end-of-life care.
DESIGN AND SETTING: Data were drawn from a survey of providers' views on principles of end-of-life care obtained during the consensus process for the Worldwide End-of-Life Practice for Patients in ICUs study.
SUBJECTS: Participants in Worldwide End-of-Life Practice for Patients in ICUs included physicians, nurses, and other providers. Our sample included 1,068 providers from 178 hospitals and 31 countries.
MEASUREMENTS AND MAIN RESULTS: We examined views on cardiopulmonary resuscitation and withholding/withdrawing life-sustaining treatments, using a three-level linear mixed model of responses from providers within hospitals within countries. Of 1,068 providers from 178 hospitals and 31 countries, 1% strongly disagreed, 7% disagreed, 11% were neutral, 44% agreed, and 36% strongly agreed with declining to offer cardiopulmonary resuscitation when not indicated. Of the total variability in those responses, 98%, 0%, and 2% were explained by differences among providers, hospitals, and countries, respectively. After accounting for provider characteristics and hospital size, the variance partition was similar. Results were similar for withholding/withdrawing life-sustaining treatments.
CONCLUSIONS: Variability in agreement with consensus statements about end-of-life care is related primarily to differences among providers. Acknowledging the primary source of variability may facilitate efforts to achieve consensus and improve decision-making for critically ill patients and their family members at the end of life.
Hospice health-care professionals (HCP) evaluate and manage cancer pain in patient homes. This study explores HCP’s perceptions of barriers that affect pain management for home hospice cancer patients. A convenience sample of 20 experienced hospice HCP were recruited from a regional hospice agency. Data were collected through two focus groups using semistructured interviews and analyzed using a constant comparative approach to generate themes. An unexpected finding revealed patient’s religious and cultural beliefs about suffering and family caregiver’s beliefs that patients deserve to suffer due to past actions are barriers to pain management in home hospice. Hospice HCP can identify patients at risk for suffering at the end of life. Interventions targeting spiritual suffering and needs are needed. Home hospice HCP have an ethical obligation to address undue suffering through family’s withholding of necessary pain medications and should consider alternative placement when home is not suitable for a peaceful death.
This study aims to examine perceptions and attitudes toward euthanasia among university students who are pursuing bachelor’s degrees. Although the legalization and application of euthanasia are discussed commonly by health-care professionals and partially by lawyers, the ideas of other segments of society, especially university students, are taken place very rarely. The research was conducted descriptively to determine the ideas of 1,170 students at Kastamonu University from six different departments: arts and sciences, theology, tourism, nursing, school of physical education, and sports with using a questionnaire. Findings demonstrated that 73.2% of the students do not approve euthanasia. Also, it was found that there are significant differences depending on age, gender, department of study, income level, place of living, and the loss of kinsmen. This study serves as a resource for future research to understand the effects of sociodemographic characteristics on the decision of euthanasia.
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.