MIse en contexte : la sédation palliative continue (SPC) suscite plusieurs questionnements. Les attitudes, connaissances et représentations de la population générale, susceptible de bénéficier de cette intervention, ne semblent pas faire l'objet de revues autrement que sous l'angle de l'expérience des proches des patients ayant reçu une SPC.
Objectif : recenser et analyser les études faisant état des attitudes, connaissances et représentations de la population générale par rapport SPC.
Méthodologie : une recension des écrits inspirée de la méthodologie scoping review a été réalisée. Une analyse orientée par les trois variables d'intérêts a permis la synthèse des données quantitatives portant sur les attitudes, ainsi qu'une analyse thématique inductive et itérative des données qualitatives issues des huits articles retenus.
Résultats : les attitudes de la population générale relatives à la SPC sont partagées, étant jugées acceptables par 25% à 81 % des répondants. Il apparaît que la SPC est reconnue de plusieurs et est associée à une pratique euthanasique pour d'autres. Les représentations de la population ont, entre autres, trait aux aspects techniques liées à l'intervention, et renvoient à des constructions symboliques antithétiques.
Conclusion : l'exploration de l'influence d'une définition claire, et exempte d'euphémisme, du concept de SPC sur les attitudes du public semble pertinente. D'autres études sont nécessaires afin de rendre compte des connaissances de la population au regard des aspects terminologique, légal et conceptuel entourant la SPC, ainsi que pour déterminer et démystifier l'objet de la confusion observée entre l'euthanasie et la SPC.
J'ai professé, en tant qu'infirmier, pendant plus de 20 ans en service d'oncologie, puis de soins palliatifs. Enseignant et psychothérapeute depuis 10 ans, j'ai la chance de continuer de travailler avec des étudiants infirmiers dans des services de soins palliatifs et de psychiatrie, ainsi que de superviser des équipes de soins. Ethicien de formation, je fais partie d'un comité d'éthique dans un hôpital neuropsychiatrique. Ces différentes casquettes me donnent le grand privilège de rencontrer à la fois des patients en fin de vie ou souffrant de troubles psychiques, des soignants et des étudiants confrontés à des situations difficiles, et de relire, en comité d'éthique, des situations cliniques de grande souffrance.
La question de l'euthanasie est très régulièrement évoquée et suscite de nombreux débats, aussi passionnels que passionnants.
Advance care planning (ACP) enables individuals to think ahead and define their goals and preferences for future treatment and care. Such a process has been shown to have a positive impact on both the indivdual and those close to them, and is widely considered to be an integral part of best practice long-term care. Implementation in daily nursing home practice however still seems to be a challenge, and research has failed to provide recommendations on how to implement ACP successfully in the complex setting of a nursing home. Effectiveness research has therefore been recommended to go beyond "does it work?" to "how and under what circumtances does it work?".
Towards successfull advance care planning in nursing homes was written as a Joint PhD dissertation and explores how to implement advance care planning successfully in nursing homes. Through the theory-based development and evaluation of a complex intervention, using qualitative and quantitative research methods, this work aims to contribute to improving advance care planning in routine nursing home care in Flanders, Belgium.
Objectives: A randomized control trial (RCT) to estimate the effect of an interventional video on improving palliative care knowledge, acceptability and attendance to outpatient services in gynecologic oncology patients.
Methods: Women receiving treatment for gynecologic malignancy recruited at an academic tertiary care center were randomized to: palliative care educational video or non-directive cancer center video. The primary outcome was referral to palliative care. Function and knowledge were assessed using the Functional Assessment of Cancer Therapy and the Palliative Care Knowledge Scale. Data analyses were performed using t-tests, Wilcoxon rank sum or Fisher's exact tests with significance level of a = 0.05.
Results: 111 women were enrolled. Demographic characteristics were equally distributed between groups with respect to age, race, cancer, and stage. There was no statistical difference in knowledge scores or in referral to palliative care between the patients that watched the educational versus control video (29% vs. 27%; p = .79). Secondary analysis showed a statistically significant increase in utilization of palliative care services compared to historic institutional data (8.8% to 31.5%; p =.001). Further, those referred had significantly worse baseline functional scores.
Conclusions: Use of a palliative care educational video did not increase knowledge or acceptability of palliative services within this RCT. However, the rate of patients referred to palliative care tripled compared to historic rates. Further studies should investigate whether discussion regarding palliative care services alone may increase desire for referral, and if use of Fact-G scores may identify patients in greatest need of services.
Objective: The completion rates of advance treatment preferences in patients with hematologic malignancies are low. To improve these rates, the modifiable factors associated with completion need to be determined. This study aimed to examine the associations of patient attitudes toward, and knowledge about, advance directives (ADs) with the patient–caregiver dyadic completion of advance treatment directive surveys.
Methods: Using a nonexperimental correlational design, 44 patient–caregiver dyads completed the questionnaires, including a Korean-Advance Directive model. Cohen's kappa coefficient and multiple logistic regression analyses examined the extent of dyadic agreement and patient factors for the dyadic completion of the advance treatment directive survey, respectively.
Results: A minor group of patients (4.5%–11.4%) and caregivers (11.4%–18.2%) preferred aggressive end-of-life treatments, whereas more patients (47.7%) and caregivers (68.2%) supported hospice care. The only significant patient–caregiver dyadic concordance on treatment directives was for chemotherapy with a moderately high agreement (kappa = 0.60: 95% CI: 2.51–3.73). One score increase in AD knowledge and having a history of hematopoietic stem cell transplant (HSCT) increased the likelihood of dyadic completion of the treatment directive survey by 43% (p = 0.039) and 917% (p = 0.047), respectively.
Conclusions: The patient–caregiver dyads in the setting of hematologic malignancy had a moderately high concordance with chemotherapy but were not associated with other treatment options. A higher level of AD knowledge and HSCT were associated with dyadic completion of the AD survey. Educational support is important to increase knowledge regarding ADs through ongoing palliative discussions among hematologic patients and their caregivers.
BACKGROUND: To provide appropriate cost-effective care for an ageing population, realignment of care provision to conditions common in advanced age, notably, dementia and multi-morbidities is required. The use of outcome measures in practice may enable this.
AIM: A collaborative baseline audit was undertaken to understand how best to implement outcome measures into services for people with dementia across clinical settings.
METHODS: An academic institution set up a 6-month collaborative baseline audit in 11 English sites. Measures comprised: symptoms/concerns (Integrated Palliative care Outcome Scale for Dementia); Phase of Illness; functional status (Australia-modified Karnofsky Performance Scale); and dementia severity (Functional Assessment Staging).
FINDINGS: Measures were completed at first assessment for 225 people with dementia across nine sites. Their completion promoted comprehensive assessments, but challenges also existed, including recording the prevalence/severity of non-physical symptoms by proxy.
CONCLUSIONS: The joining together of clinical academic expertise enabled mobilisation of expert knowledge into and from clinical practice.
AIMS AND OBJECTIVES: To examine the content and reported psychometric properties of instruments for assessing nurses´ palliative care knowledge and skills in specialised healthcare units.
BACKGROUND: Knowledge of palliative care, and competence in the delivery of care, are essential. Assessment of competence is an important means of evaluating the knowledge and skills of practitioners in order to improve the quality of care provided for patients and their families.
DESIGN: An integrative review.
METHODS: A systematic literature search was conducted in November 2018 in five databases: CINAHL, PubMed (Medline), Cochrane, Scopus and Web of Science. The quality assessment was conducted using the Joanna Briggs Institute´s (JBI) Checklist for Analytical Cross-Sectional Studies. The data was analysed using content analysis. PRISMA guidelines were followed to ensure explicit reporting.
RESULTS: Overall, 5,413 studies were identified and 23 met the inclusion criteria. Nurses' knowledge and skills, as assessed by the instruments, were: 1) care for the patient, 2) care for the patient´s family and 3) professional requirements. Ten instruments were identified assessing nurses' knowledge and skills through knowledge tests and skill-evaluation self-tests. The psychometric properties of the instruments were reported to varying degrees, mainly focusing on internal consistency and content validation.
CONCLUSIONS: Nurses´ knowledge and skills were seen to contribute to the holistic care of the patient and his or her family, and the possession of adequate information and skills is essential when dealing with death and dying. The instruments are commonly available and potentially reliable, although reliability must be determined with caution, so validation studies in other cultures are recommended.
RELEVANCE TO CLINICAL PRACTICE: These results could be utilised to improve the quality of palliative care by evaluating the knowledge and skills of nursing staff, or when considering the needs of palliative care education.
Background: This study aimed to investigate lung cancer patients and attitudes of their caregivers toward advance directives (ADs) in China.
Methods: A cross sectional study was conducted in the Department of Oncology outpatient clinic in West China Hospital, Sichuan University. A questionnaire was used to survey the attitudes of lung cancer patients and caregivers toward ADs.
Results: A total of 148 lung cancer patients and 149 caregivers were enrolled into the study. Of these, 94.6% and 89.9% of patients and caregivers had not heard of AD and none of those in the study had ever signed an AD. A total of 79.7% patients and 75.2% caregivers were willing to sign ADs after they were provided with information. Patients who preferred the end of life period to sign ADs were 5.4 times more likely to have ADs than patients who chose to sign ADs when their disease was diagnosed (P < 0.05, 95%CI [1.27–22.93]). Caregivers who were reluctant to undergo chemotherapy when diagnosed with cancer were 2.16 times more likely to sign ADs than those willing to receive chemotherapy (P < 0.05, 95%CI [1.20–3.90]).
Conclusions: In China, lung cancer patients and their caregivers showed lack of knowledge about ADs, and the completion rate of ADs was extremely low. However, participants were positive about ADs and public education on ADs may help to increase the completion rate of ADs in China.
To describe the knowledge and attitude of Chinese patients with advanced cancer towards advanced care planning (ACP), a convenience sample of 275 patients with advanced cancer was recruited from a tertiary cancer hospital in Beijing, China, between February and December 2017. The multi-item questionnaire focused on patients’ demographics, disease characteristics and knowledge about and attitude towards ACP and was administered to eligible patients. Descriptive statistics were performed. Most patients had never heard about ACP (82.2%) and had never talked about ACP (83.0%), but only a few (18.3%) were not willing to talk about ACP. A total of 67.8% patients chose to refuse resuscitation attempts or life-sustaining medical interventions, and 70.8% of patients hoped to have surrogate decision makers when they became unconscious. By binary logistic regression analysis, patients who were of greater age, female and living in urban areas preferred to refuse resuscitation attempts or life-sustaining medical interventions (OR = 1.023, P = 0.042; OR = 2.011, P = 0.020; OR = 0.254, P < 0.01); patients who had very rich or rich family economic status preferred to involve surrogate decision makers compared with patients of very poor family economic status (OR = 0.250, P = 0.011). There is a large gap between the knowledge about ACP and the expectation of implementing ACP in Chinese patients with advanced cancer. To develop culturally appropriate and individualized programmes to promote knowledge and implementation in practice of ACP among Chinese patients with advanced cancer and their relatives is still a significant challenge.
PURPOSE: This study is aimed to investigate the effect of web-based pediatric palliative care education on nursing students' knowledge level and practices related to palliative care.
METHODS: The study was conducted with 265 nursing students including an intervention and a control group. The intervention group was given web-based pediatric palliative care education.
FINDINGS: A statistically significant difference was found between the total and subscale pretest and posttest scores of the students in the intervention and control groups regarding the palliative care knowledge level and self-reported palliative care practices.
PRACTICAL IMPLICATIONS: The web-based pediatric palliative care education is an effective training model for nursing students to improve palliative care knowledge level and practices of the students.
Background: Little is known about how certain educational interventions may improve informed code status discussions by physician assistant (PA) and nurse practitioner students.
Methods: This is a prospective, prospective, single academic center pilot study utilizing a short case-based PowerPoint that reviewed the differences between code status choices and the likelihood of survival to hospital discharge of attempted resuscitation after a cardiac arrest. Training occurred between September 1, 2017, and May 31, 2018. The study population included PA and adult gerontology acute care nurse practitioner (AGACNP) students during their inpatient internal medicine rotation (n = 9) and preclinical PA students (n = 5).
Results: After training, there was a significant increase in knowledge in the likelihood of survival to hospital discharge (P = .01) and comfort level in having an informed code status discussion (3.36 ± 0.81 vs 4.10 ± 0.80, P = .02). For questions related to identification of the correct code status, there were no significant differences before and after the intervention.
Conclusion: A short case-based PowerPoint viewed by PA and AGACNP students increased the knowledge about the likelihood of survival to hospital discharge of attempted resuscitation after a cardiac arrest and increased the comfort level of having code status discussions with patients by PA and AGACNP students.
Background: Palliative care is predominantly accessed late in the course of an illness, despite evidence to suggest the benefits of early engagement. Strategies are required to reduce the barriers to the delivery of palliative care.
Aim: To describe community understandings of and attitudes to palliative care and explore characteristics significantly associated with favourable attitudes towards palliative care.
Design: Cross-sectional survey data were collected including several sociodemographic characteristics, knowledge of palliative care and attitudes to palliative care. Correlational analyses identified factors related to positive attitudes to palliative care. Those of significance (p <=0.01) were examined using a multiple regression model to determine their predictive value.
Setting/participants: A community-based sample of consecutive English-speaking adults who volunteered their participation in response to a study advertisement distributed online through established community groups.
Results: A total of 421 participants (75% female, mean age: 51 ± 15.1) reported a median of at least three misperceptions of palliative care. Older age, previously undertaking a caregiving role, knowing someone who had received palliative care and reporting more accurate knowledge of palliative care significantly predicted favourable attitudes to palliative care (adjusted R2 = 0.24, F(8, 333) = 13.2, p < 0.001). Other factors typically associated with health literacy such as tertiary education, working at a medical facility and speaking a language other than English at home were not predictive.
Conclusion: Gaps in knowledge about palliative care exist in community, which may limit citizen’s potential access to quality care in the event of serious illness. These results point to a role for public education programmes, which may, in turn, also shift attitudes to palliative care.
Dans le cadre de la prise en charge des personnes en fin de vie, la mise en application des dispositions relatives aux directives anticipées reste une difficulté sur le terrain. Une équipe soignante de Saône-et-Loire a mené un travail de recherche sur cette question et ainsi éclairé plusieurs freins, dont une : méconnaissance de la loi et un, manque d’information du public. Des pistes de réflexion prolongent ces travaux.
OBJECTIVE: To analyse the level of knowledge and attitudes concerning living wills of nurses working in 3 hospitals of Servizo Galego de Saúde (Spain).
METHOD: Descriptive, cross-sectional, multi-centre study. Stratified sampling was carried out with nurses from the University Hospital Complexes of Ourense, Ferrol and Vigo. A sample size of 239 individuals was calculated. The data was collected during the first semester of 2018 using a validated self-administered questionnaire («Cuestionario de conocimientos y actitudes de los profesionales sanitarios en el proceso de declaración de voluntades vitales»).
RESULTS: A total of 262 nurses participated. Fifty percent believe that health professionals are obliged to inform about living wills. Two percent consider that they have enough information on the subject, and this is demonstrated in the knowledge questions, where between 61%-93% fail in the questions related to the documentation, use, and their legal aspects. Eighty-four percent consider that they have the obligation to uphold the values and beliefs of patients, and 89% that patients have the right to receive and decide on the right care. Thirteen percent consider that patients are not well informed about living wills, and 83% would recommend to chronic patients that they complete a living will.
CONCLUSIONS: Nurses have a great lack of knowledge about the legal aspects and the use of living wills, which makes them feel unable to inform their patients about them. Despite of the lack of knowledge, their attitude is positive and most of them state that they would recommend them to their patients.
Background: Advance directives have been established as a legal document that ensures patients' wishes are followed if/when they cannot make medical decisions for themselves. The concept, advance directive, is rooted in the ethical principle of patient's autonomy. New York State recognizes three types of advance directives: New York State Health Care Proxy, Living Wills, and Do Not Resuscitate (DNR) order. A common misnomer in healthcare is the idea that advance directives are for the elderly or patients with terminal illness. As per New York State statutes, everyone older than 18-years-old should have an advance directive to avoid conflicts in times of crisis. It has been shown that most patients believe it is their physician's responsibility to initiate an advance directive discussion and residents are at the forefront of most health facilities.
Objective: To assess the knowledge and attitude of internal medicine residents towards advance directive and to improve residents' skills and confidence on advance directive discussion.
Design: We carried out a prospective study to assess the knowledge and attitude of the internal medicine residents towards advance directive to validate the need to implement didactic sessions and simulations. Results: Fifty out of the 75 internal medicine residents of Harlem Hospital Center participated in the study. Most of the responders indicated that they lacked sufficient knowledge in advance directive discussion and indicated that they were interested in didactic sessions and simulations related to how to help patients with advance directives.
Conclusion: Our study showed that most of the residents lacked sufficient knowledge in advance directives discussions and the importance of its incorporation into residency training education.
BACKGROUND: Despite the documented and well known patient benefits of ACP, the completion of ACP, only a minority of patients, during the advanced or EOL stage of their illnesses, receive such care. The misconceptions about ACP for healthcare providers, such as nurses, might become potential barriers to the effective implication of ACP. Also, from the transcultural perspective, it is evident essential to explore Taiwanese nurses' attitudes, knowledge, and actions of ACP. The purposes of this study were to explore the implication of ACP or hospice care for nurses caring for non-cancer chronic illness patients at a regional teaching hospital in Taiwan; and, to identify predictors of those nurses' knowledge, attitudes, and actions toward ACP.
METHODS: This cross-sectional study with a purposive sample of 218 nurses was conducted at a teaching hospital in southern Taiwan. Structured questionnaires were employed and data were analyzed with descriptive statistics, t-test, one-way ANOVAs, Pearson's correlation and multiple regressions.
RESULTS: 16.1% of Taiwanese physicians actively initiated ACP issues or conversations with patients or their family members. Nurses' attitudes toward ACP were fairly positive but their knowledge about ACP was insufficient and actions of ACP were not positively executed. The predictors of ACP-Knowledge (ACP-K) included position title, education hours and lacking of educational training. The predictors of ACP-Attitude (ACP-A) included ACP-K and "fear of patient or family member not accepting", whereas ACP-A, position title, "patients do not feel necessary" and "not sure physician's concern" were the predictors of ACP-Act.
CONCLUSION: Continuous education and training for nurses regarding ACP needs to be improved by taking those predictors found in this current study into account, and more studies on the nurse's role in ACP also should be further examined.
TRIAL REGISTRATION: KAFGH 106-012. Date of registration 1 May 2017.
BACKGROUND: We sought to evaluate the effect of an integrated prospective payment program (IPP) on knowledge of hospice care and willingness to participate in hospice care among family members of patients on prolonged mechanical ventilation (PMV).
METHODS: Between November 2013 and April 2014, we used paper-based survey questionnaires from 64 institutions to evaluate knowledge, willingness, and related factors among the main caregivers of patients on PMV regarding hospice care and to determine whether their decisions for the patients were affected by the IPP.
RESULTS: The average ages of the respondents and patients on PMV were 51.9 y and 70.8 y respectively; 70.6% of the respondents knew about the Hospice Palliative Care Act (HPCA), and 42.3% of the medical staff had introduced hospice care-related information to patients and caregivers in Taiwan. Among the caregiver respondents, 67.6% agreed to write a letter of intent regarding the choice of hospice care or limited life-sustaining treatment. In total, 66.2% (16.1 + 50.1%) of the respondents agreed to hospice care for their family members (ie, the patients on PMV) when the condition was terminal. The factors of greater HPCA knowledge among the patients on PMV were IPP participation, female sex, and coma status. Factors leading to higher levels of HPCA knowledge included age = 65 y being married, higher income, awareness of the law, and being introduced to hospice care by medical staff.
CONCLUSIONS: High levels of hospice care knowledge were unrelated to willingness to participate. HPCA knowledge was greater in the IPP group than in the non-IPP group; however, there was no significant difference in the willingness to agree to hospice care. It is recommended that individuals be encouraged to express their medical decisions.
Objective: Acceptance of palliative care (PC) in the USA has increased in recent decades with the growing number of recommendations for adoption from professional organisations. However, there are prevalent public misperceptions of PC that may prevent broader utilisation. This study seeks to identify the primary sources for PC information, which may help identify sources of misperception and improve PC messaging.
Methods: We analysed the 2018 Health Information National Trends Survey (HINTS), a representative survey of USA population knowledge regarding cancer-related information. This is the first iteration to include questions on PC. Prevalence of preferred PC information sources was estimated; multivariable logistic regression invoking stepwise variable selection was used to determine associations with information-seeking behaviour.
Results Our study cohort consisted of 1127 American adults who were familiar with PC. Overall, 59.3% and 34.0% relied primarily on healthcare providers and internet or printed media, respectively. In stepwise regression models of seeking information from healthcare providers, predictors and their relative contributions to the multivariable model were higher education attainment (58.7%), age =60 years (21.5%) and female sex (15.0%). Higher income was the most robust predictor (35.1%) of reliance on internet and printed media for information, followed by being currently married (26.2%).
Conclusions Overall, American adults rely on healthcare providers and media for PC information, with significant sociodemographic differences in information-seeking behaviour. These findings may be used to inform strategies to promote accurate PC awareness.
BACKGROUND: Advanced care planning (ACP) is an essential component of quality palliative care in nursing homes. Despite the benefits associated with ACP in nursing homes, completion rates are low. Staff members' knowledge and attitudes toward ACP were found to be main determinants of ACP completion.
AIMS: To assess nursing home staff members' attitudes towards ACP and their association to different types of knowledge.
METHODS: A convenience sample of 138 nursing home staff members (69% female, 53% non-Jewish, 46% nurses) who reported having heard the terms advanced directives and durable power of attorney completed a structured questionnaire assessing attitudes toward ACP, subjective knowledge, and three types of objective knowledge (declarative, legal and procedural) regarding ACP, as well as socio-demographic and professional factors.
RESULTS: Participants expressed positive attitudes toward formal and informal aspect of ACP, although their subjective and objective knowledge in the topic was moderate. Hierarchical regression analyses revealed that the three dimensions of objective knowledge improved significantly the participants' attitude scores.
DISCUSSION: There is a need to integrate different types of knowledge in educational programs provided to nursing home staff members to improve their involvement in ACP initiatives with residents and family members.