La fin de vie est devenue un enjeu important pour les EHPAD. Il est donc nécessaire de prendre son temps dans l'accompagnement des personnes en fin de vie, afin d'effectuer une prise en soins de qualité. Ce n'est qu'à ce prix qu'elle pourra atteindre son objectif, et permettre aux soignants d'être dans un idéal de soins.
Background: Clinician-family communication is a central component of medical decision-making in the intensive care unit (ICU) and the quality of this communication has a direct impact on decisions made regarding care for patients who are critically ill.
Aim: The purpose of the project was to emphasise the need for quality improvement in the medical ICU at the University of Florida Health Hospital in regard to communication between the patients, families and providers.
Method: Interventions included development of a more systemic approach to primary palliative care by using the nationally recognised and published Care and Communication Bundle tool. The Bundle is a standardised clinical pathway of palliative care best practices.
Results: During the project period, staff satisfaction/engagement increased from tier 3 to tier 1 level, the medical ICU length of stay decreased from 4.97 days in fiscal year (FY) 2016 to 4.22 days in FY2017. Moreover, the number of patients discharged directly to hospice increased from 21 in FY2016 to 42 in FY2017, representing a 100% increase. Additionally, palliative care consults decreased in the medical ICU (FY2016=108, FY2017=82), as a result of an increase in daily primary palliative care interventions. The findings demonstrate an improvement in outcome measures during the project.
BACKGROUND: Older adults prefer comfort over life-sustaining care. Decreased intensity of care is associated with improved quality of life at the end-of-life (EOL).
OBJECTIVES: This study explored the association between advance directives (ADs) and intensity of care in the acute care setting at the EOL for older adults.
METHODS: A retrospective, correlational study of older adult decedents (N = 496) was conducted at an academic medical center. Regression analyses explored the association between ADs and intensity of care.
RESULTS: Advance directives were not independently predictive of aggressive care but were independently associated with referrals to palliative care and hospice; however, effect sizes were small, and the timing of referrals was late.
CONCLUSION: The ineffectiveness of ADs to reduce aggressive care or promote timely referrals to palliative and hospice services, emphasizes persistent inadequacies related to EOL care. Research is needed to understand if this failure is provider-driven or a flaw in the documents themselves.
OBJECTIVE: To examine factors associated with perceived quality of communication with physicians by relatives of dying residents of long-term care facilities (LTCFs).
DESIGN: A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. In each LTCF, deaths of residents during the 3 months before the researcher's visit were reported. Structured questionnaires were sent to the identified relatives of deceased residents.
SETTINGS AND PARTICIPANTS: A total of 736 relatives of deceased residents in 210 LTCFs (in Belgium, Finland, Italy, the Netherlands, and Poland).
METHODS: The Family Perception of Physician-Family Communication scale (FPPFC) was used to assess the quality of end-of-life (EOL) communication with physicians as perceived by relatives. We applied multilevel linear regression models to find factors associated with the FPPFC score.
RESULTS: The quality of EOL communication with physicians was perceived by relatives as higher when the relative spent more than 14 hours with the resident in the last week of the resident's life (b = 0.205; P = .044), and when the treating physician visited the resident at least 3 times in the last week of the resident's life (b = 0.286; P = .002) or provided the resident with palliative care (b = 0.223; P = .003). Relatives with higher emotional burden perceived the quality of EOL communication with physicians as lower (b = -0.060; P < .001). These results had been adjusted to countries and LTCF types with physicians employed on-site or off-site of the facility.
CONCLUSION: The quality of EOL communication with physicians, as perceived by relatives of dying LTCF residents, is associated with the number of physician visits and amount of time spent by the relative with the resident in the last week of the resident's life, and relatives' emotional burden.
IMPLICATIONS: LTCF managers should organize care for dying residents in a way that enables frequent interactions between physicians and relatives, and emotional support to relatives to improve their satisfaction with EOL communication.
Doctors are required to notify Child Protective Services (CPS) if parents do not provide appropriate medical care for their children. But criteria for reporting medical neglect are vague. Which treatments properly fall within the realm of shared decision-making in which parents can decide whether to accept doctors' recommendations? Which treatments are so clearly in the child's interest that it would be neglectful to refuse them? When to report medical neglect concerns to CPS may be controversial. It would seem inhumane to allow a child to suffer because of parental refusal to administer proper analgesia. In this ethics rounds, we present a case of an adolescent with chronic pain who is terminally ill. Her parents were not adherent to recommended analgesia regimens. Her palliative care team had to decide whether to report the case to CPS.
Introduction: Patients with end-stage liver disease (ESLD) suffer from myriad symptoms due to the systemic effects of the disease and unpredictable acute episodes, which contribute to progressive deterioration in quality of life (QOL). Despite clear evidence that palliative care (PC) improves QOL in other serious illnesses, PC is underutilized and delayed for ESLD patients. Through a comparative effectiveness trial of specialist led consultative PC (Model 1) versus trained hepatologist led PC (Model 2), we aim to build evidence on introducing PC into the routine outpatient care of ESLD patients.
Objective: We hypothesize that trained hepatologist led PC model will have a better improvement in QOL compared to consultative PC model.
Methods: This two-arm, multicenter cluster-randomized trial assesses the effectiveness of two PC models for patients with ESLD. Fourteen clinical centers will recruit 1260 patient-caregiver dyads. Each center is the unit of randomization. Hepatologists at sites randomized to the Model 2 have undergone web-based training in the principles of PC as pertained to ESLD. PC intervention is delivered over four visits (initial, one, two, and three months). Follow-up assessments occur at 6, 9, and 12 months. Eligible patients are those with new onset or ongoing complications of ESLD with a caregiver willing to participate.
Outcomes: The primary outcome is change in patients' QOL from baseline to three months. Secondary outcomes include symptom burden, depression, distress, satisfaction with care, caregiver burden and QOL, goal concordant care, and health care utilization.
Challenges and Contributions Engagement: research advisory board has been developed with representatives from the participating centers, who have provided active feedback on the protocol, outcomes, study methods, and training program.
Intervention Fidelity: Intervention fidelity will be maintained by adherence to a visit agenda and providers in both models completing a PC checklist after each study visit.
OBJECTIVES: To examine the effect of mode of survey administration on response rates and response tendencies for the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey and develop appropriate adjustments.
DESIGN: Survey response data were obtained after sampling and fielding of the CAHPS Hospice Survey in 2015. Sampled caregivers and decedents were randomized to one of three modes: mail only, telephone only, and mixed mode (mail with telephone follow-up). Linear regression analysis was used to examine the effect of mode on individual responses to questions (6 composite measures and 2 global measures that examine hospice quality).
SETTING: U.S. hospice programs (N = 57).
PARTICIPANTS: Primary caregivers of individuals who died in hospice (N = 7,349).
MEASUREMENTS: Outcomes were 8 hospice quality measures (6 composite measures, 2 global measures). Analyses were adjusted for differences in case-mix (e.g., decedent age, payer for hospice care, primary diagnosis, length of final episode of hospice care, respondent age, respondent education, relationship of decedent to caregiver, survey language, and language spoken at home) between hospices.
RESULTS: Response rates were 42.6% for those randomized to mail only, 37.9%, for those randomized to telephone only, and 52.6% for those randomized to mixed mode (P < .001 for difference). There were significant mode effects (P < .05) for 10 of the 24 questions that compose the quality measures, with mail-only respondents being significantly more likely to report better experiences than telephone-only respondents.
CONCLUSION: Unlike results observed in previous mode experiments for hospital CAHPS, hospice primary caregivers tend to respond more negatively by telephone than by mail. Valid comparisons of hospice performance require that reported hospice scores be adjusted for survey mode.
BACKGROUND AND OBJECTIVES: Little is known about the quality of end-of-life care for patients with advanced CKD. We describe the relationship between patterns of end-of-life care and dialysis treatment with family-reported quality of end-of-life care in this population.
DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We designed a retrospective observational study among a national cohort of 9993 veterans with advanced CKD who died in Department of Veterans Affairs facilities between 2009 and 2015. We used logistic regression to evaluate associations between patterns of end-of-life care and receipt of dialysis (no dialysis, acute dialysis, maintenance dialysis) with family-reported quality of end-of-life care.
RESULTS: Overall, 52% of cohort members spent = 2 weeks in the hospital in the last 90 days of life, 34% received an intensive procedure, and 47% were admitted to the intensive care unit, in the last 30 days, 31% died in the intensive care unit, 38% received a palliative care consultation in the last 90 days, and 36% were receiving hospice services at the time of death. Most (55%) did not receive dialysis, 12% received acute dialysis, and 34% received maintenance dialysis. Patients treated with acute or maintenance dialysis had more intensive patterns of end-of-life care than those not treated with dialysis. After adjustment for patient and facility characteristics, receipt of maintenance (but not acute) dialysis and more intensive patterns of end-of-life care were associated with lower overall family ratings of end-of-life care, whereas receipt of palliative care and hospice services were associated with higher overall ratings. The association between maintenance dialysis and overall quality of care was attenuated after additional adjustment for end-of-life treatment patterns.
CONCLUSIONS: Among patients with advanced CKD, care focused on life extension rather than comfort was associated with lower family ratings of end-of-life care regardless of whether patients had received dialysis.
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.
Spiritual care at the End of Life (EOL) is a "keystone" investment at any Regional Tertiary Acute Care Hospital. Spiritual Care Departments need to demonstrate quality indicators in the provision of spiritual care at an EOL not only for their patients, but to satisfy family expectations of that care for their loved one. A fixed choice survey instrument using a structured interview via telephone was utilized for 202 criterion families who had lost a loved one. Three domains surfaced: (1) Families retained traditional chaplain role expectations of Priestly/Liturgical (78.6%) and Pastoral/Shepherd (67.5%); (2) Expectations of an expanded chaplain role after the EOL (50%); and, (3) Traditional spiritual care services regardless of one's religion or spirituality: Comfort and care, emotional support (96%); active listening (96.5%); the Chaplain as a reminder of God's presence (93.6%); prayer (96%); scripture reading (69.3%); and ritual/sacramental anointing of the sick (71.3%).
OBJECTIVES: On 19 June 2019, assisted dying became lawful in Victoria, the second most populous state in Australia. Section 8 of the Voluntary Assisted Dying Act is a legislative safeguard that is designed to ensure a patient's request for assistance to die is voluntary. This section prohibits health practitioners from initiating a conversation about assisted dying with the patient. This article explores the potential implications of this prohibition for effective communication between doctors and their patients, and the ability of doctors to provide high quality end-of-life (EOL) care in some cases.
METHOD: The authors reviewed and analysed literature on the importance of communication at the EOL including the need to understand and appropriately respond to Desire to Die or Desire to Hasten Death statements. A legal critique of section 8 of the Victorian Voluntary Assisted Dying Act was also undertaken to determine the scope of this new duty and how it aligns with existing legal obligations that would otherwise require doctors to provide information about EOL options requested by a patient.
RESULTS: Contemporary literature suggests that open and honest communication between doctor and patient including the provision of information about all EOL options when sought by the patient represents good clinical practice and will lead to optimal EOL care. The provision of such information also reflects professional, ethical and legal norms.
CONCLUSION: Despite (arguably) promoting an appropriate policy objective, the legislative prohibition on health professionals initiating conversations about voluntary assisted dying may, in cases where patients seek information about all EOL options, lead to less optimal patient outcomes.
The importance of end of life care (EoLC) for patients and their families is well documented, however, the skills and knowledge of emergency clinicians in delivering EoLC is not widely understood but it is clear from the existing literature that we fall short in delivering consistently good EoLC although there is recognition of the need to improve. This paper will acknowledge the challenges of delivering good EoLC in the emergency department (ED) but more importantly consider practical ways of improving EoLC in the ED in line with best practice guidelines on EoLC.
INTRODUCTION: The analysis of patients' satisfaction with healthcare is recognised as being useful in the evaluation of health outcomes and perceived quality of care. Little is known, however, about how the psychological status of women who experience perinatal complications may affect their perceived satisfaction with care.
METHODS: We assessed healthcare satisfaction in 52 women who had undergone intrauterine surgery during a complicated monochorionic twin pregnancy and examined the influence that fetal loss and sociodemographic, clinical, and psychological factors had on the degree of satisfaction. Data were gathered in an individual interview and through the administration of the Medical Patient Satisfaction Questionnaire, Beck Depression Inventory, and State-Trait Anxiety Inventory. Relationships between variables were analysed using a chi-square test, Spearman's rho, Student's t test, and the Mann-Whitney U test, in accordance with the metric nature of the variables and the assumptions fulfilled.
RESULTS: Age and level of education were not associated with the degree of healthcare satisfaction. Negative but non-significant correlations were observed between the level of satisfaction and symptoms of anxiety and depression. Satisfaction with healthcare was high in the sample as a whole, although it was significantly higher among women who had not experienced fetal loss. There were no differences in satisfaction with services involving direct contact with medical staff, whereas satisfaction with indirect services was lower among women who had experienced perinatal loss.
CONCLUSIONS: Due to the unique characteristics of this population, specialised care teams of both professional healthcare and indirect services are needed. Although administrative aspects of healthcare are regarded as being of secondary importance, this may not be the case with more vulnerable populations.
PURPOSE: It has been shown that integrating palliative care (PC) in intensive care unit (ICU) improves end-of-life care (EOLC), but very few Canadian hospitals have adopted this practice. Our study aims to evaluate the perceived quality of EOLC at participating institutions and explore barriers toward ICU-PC integration.
MATERIALS AND METHODS: A self-administered questionnaire was developed by a multidisciplinary team. Survey items were extracted from published quality indicators in EOLC and barriers to ICU-PC integration. The study took place at 2 academic institutions. Participants consisted of physicians and nurses, ICU administrators, and allied health workers.
RESULTS: An overall response of 45% was achieved. Of total, 85% of the respondents were ICU nurses. The following main themes were identified: (1) There is a poor presence of PC in the ICU and 78% of respondents felt that increasing ICU-PC integration will improve quality of EOLC; (2) the main barrier to integration was unrealistic patient and/or family expectations; and (3) criteria-triggered consultation to PC was the most feasible way to achieve integration.
CONCLUSION: Our findings indicate that the majority of respondents perceive that the presence of PC in ICU will improve EOLC. Future quality improvement initiatives can focus on developing a set of criteria for triggering PC consults.
OBJECTIVE: To explore the good death of terminally ill patients with cancer rated by nurses and identify associated factors in the context of Chinese culture.
METHODS: We conducted a cross-sectional, anonymous questionnaire survey. Totally, convenience samples of 122 nurses in charge of 258 patients during their dying period were investigated. The questionnaire consisted nurses' information including demographics and the experience in palliative care, patients' demographic information and disease characteristics, and Good Death Inventory (GDI).
RESULTS: Two hundred and fifty-eight (98.10%) analysable questionnaires were obtained. The total good death score was (245.40 ± 36.91), and the last three were "Independence" (7.34 ± 4.26), "Physical and psychological comfort" (8.12 ± 4.70) and "Religious and spiritual comfort" (8.44 ± 4.55); the first three were "Being respected as an individual" (18.31 ± 2.90), "Good relationship with medical staff" (18.26 ± 2.37) and "Natural death" (18.16 ± 3.22). The unit type, treatment patients received during their last 3 months and nurse's training experience in palliative care were associated factors of good death (R2 = 0.135, F = 9.160, p < .001).
CONCLUSION: The good death status of terminally ill cancer patients is poor. It's urgent to promote palliative care and strengthen the training about the knowledge and skills to improve the quality of life of the patients, so as to achieve the goal of good death.
AIM: To explore and compare acute and long-term care professionals' perspectives about pediatric palliative care.
METHODS: Focus group interviews were conducted in 2016-2017 with professionals from acute (Emergency Department, Intensive Care Unit) and long-term care (Complex Care Service, Palliative Care) teams.
RESULTS: Fifty-eight participants were enrolled. Palliative care definitions were similar throughout groups: to provide active care early in the illness, focusing on the child as a whole and supporting families. Each group perceived a different role in the patient's illness trajectory, reflecting their own culture of care. They demonstrated important differences in their approach to palliative care. Disagreements regarding when or how to discuss goals of care were expressed. Acute care professionals reported discomfort when having to introduce these discussions for the first time, while long-term care professionals perceived negative judgments about their patients' quality of life by acute care teams during health events. Personalized care, communication with families and continuity of care were thought to be key elements to improve care.
CONCLUSION: Pediatric palliative care is well recognized throughout specialties, yet continuity of care is challenged by groups' roles and interventions in a patient's illness. A reflective and mutual clinical approach is needed to improve quality of care and professionals' satisfaction.
CONTEXT: Many patients with advanced cancer experience aggressive care during the end-of-life. Several studies have evaluated the benefits of palliative care (PC) on the reduction of aggressive measures; however, limited data are available about their benefit in Brazilian patients.
OBJECTIVES: To evaluate the impact of palliative care on the reduction of aggressive measures at the end-of-life.
METHODS: Longitudinal study that analyzed retrospectively medical records of patients who died of advanced cancer from 2010 to 2014. Data were obtained on PC referral and five quality of end-of-life care indicators; i.e., emergency department visits, hospital admission, intensive care unit admission, use of systemic antineoplastic therapy within the last 30 days of life and place of death in hospital as well as the use of a composite score for aggressiveness of care.
RESULTS: Out of the 1,284 patients, 832 (65%) received some aggressive measures in end-of-life care. Over the years, there was a reduction in the aggressiveness of care (score = 0: 33.2% vs. 47.1%, p<0.001). Patients not seen by PC received greater aggressive care compared with patients consulted by PC (score =1: 87.4% vs. 52.8%, p <0.001). Early PC was associated with less chemotherapy (p=0.001) and fewer emergency department visits (p=0.004) in the last 30 day of life, when compared with late PC. However, there were no demonstrated benefits to significantly reduce the composite score at end-of-life care aggressiveness.
CONCLUSIONS: Patients with an advanced cancer consultation by PC staff received less aggressive care at the end-of-life when compared to patients without PC.
Background: The goal of the 4th edition of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care (NCP Guidelines) is to improve access to quality palliative care for all people with serious illness regardless of setting, diagnosis, prognosis, or age.
Objective: The NCP Guidelines are intended to encourage and guide healthcare organizations and clinicians (including nonpalliative care specialists) across the care continuum to integrate palliative care principles and best practices into their routine assessment and care of all seriously ill patients and their family caregivers.
Methods: The NCP Guidelines formalize and delineate evidence-based processes and practices for the provision of safe and reliable high-quality palliative care for adults, children, and families with serious illness in all care settings.
Results: This article presents the key domains and guidelines of the 4th edition.
The present doctoral thesis focuses on evaluating the use, trends in use, factors that influence use, and the impact of using policy measures to support patients and informal caregivers to provide palliative care in the home or community setting in Belgium. Using full-population administrative databases containing information on all decedents in Belgium between 2010 and 2015, we provided insights into these patterns that allow formulating points of improvement, identification of focal groups for policy, but also allow evaluating the societal impact of the measures in tems of quality and costs of care.
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