DONATE-Pilot Study on ICU Management of Deceased Organ Donors
Deceased Organ DonorsCritical CareThe DONATE-Pilot is a prospective observational cohort study in organ donation (OD) that observes the ICU management of consented deceased organ donors at 4 high volume centres over a period of 12 months each. The pilot study will be followed by a 1-year prospective national observational study a 15-20 ICUs across Canada.
Withdrawal of Artificial Nutrition at the End of Life (PERCEPAL)
Palliative Care NursingWithdrawing artificial nutrition in palliative care is an issue that often leads to ethical dilemmas among health care providers, despite clinical guidelines.
Primary Prevention of Sudden Cardiac Death (PREV-DEATH)
Chronic Heart FailureThe efficacy of implantable cardioverter-defibrillators (ICD) in primary prevention of sudden cardiac death (SCD) is well demonstrated but pivotal studies have been published more than 10 years ago and implantation's conditions tend to change.
Uncontrolled Donation After Circulatory Determination of Death (uDCDD)
Uncontrolled Donation After Circulatory Determination of DeathWorld-wide, patients waiting for organ transplantation exceed the number of organs available. Many European countries have a uDCDD program which contribute to 10-15% of the donor pool. In Canada, this type of program does not exist. The purpose of this study is to report how many deceased person fulfill the criteria for uncontrolled DCDD in a Canadian medical center.
PREVENTION-ACHD Risk Score
DeathSudden4 moreSudden cardiac death (SCD) is one of the major causes of mortality in adults with congenital heart disease (ACHD). Risk stratification for sudden cardiac death in this patient group is challenging and at the current moment there are no clear guidelines on implantable cardioverter-defibrillator (ICD) implantation for primary prevention of SCD in this young patient population. The reason for this is the fact that this is a heterogenous group of patients and SCD is a relatively rare event. Because of this there have been no prospective studies on SCD in ACHD. However, multiple retrospective studies on ICD implantation in ACHD have shown that this treatment does appear to be effective. Researchers from the Academic Medical Center have identified several risk factors for sudden cardiac death. A risk score was created using this data, which has been validated in an internal and external cohort in a retrospective setting. The design of this study, including the conception of the risk score, its calculation method and validation will be published in an international scientific peer-reviewed journal. The hypothesis of this study is that the risk score accurately predicts the risk of sudden cardiac death.
Research Into the Quality of the Dying Phase
Cessation of LifeThe aim of this study is to get insight in the quality of life at the end of life and quality of dying for patients died at the hospital in the department Groningen (the Netherlands). The primary endpoint is the quality of life at the end of life and the secondary endpoint is the quality of dying. Both according a numerical rating scale. An explorative analysis will be done for differences for the hospitals in Groningen, effect of using the Liverpool care Pathway for the dying, effect of using consultation by the palliative consultation team, effect of using the Hospice@UMCG intervention, correlation with the quality of life at the end of life and quality of dying according to nurses and doctors.
Wellness and Distress in Health Care Professionals Dealing With End of Life and Bioethical Issues...
BurnoutProfessionalBurnout, fatigue, distress and negative issues are in health care providers with different percentages. To date, little is known about the experience of burnout, fatigue and distress related with end of life and bioethical issues. The main aim of this study is to quantify burnout and identify a set of variables (meaning of life, stress, moral distress, ethical climate, resilience, positive and negative affects) that may impact on professionals dealing with end-of-life and bioethics issues in their working life. The project is an observational multicentre cross-sectional study, population-based. The target population is composed by psychologists, nurses and other healthcare providers dealing with end-of-life/palliative care and other conditions. The study will be conducted using a mixed methods, using both quantitative and qualitative approaches. Regarding the quantitative approaches, standardized questionnaires will be administered anonymously to each participant in one time only. Concerning the qualitative approaches, semi-structured interviews will be carried out until the saturation of categories is reached according to the Grounded Theory methodology It is mainly attended that this project may shed light on wellness and distress related to end-of-life and bioethical issues faced in working life by health care providers, considering not only risk factors but also protective and positive ones. The quantitative part of the research is supposed to identify the dimension of burnout in this health-care professionals category and to better clarify the role of some variables (meaning of life, stress, moral distress, ethical climate, resilience, positive and negative affects) that may modulate and affect wellness and distress experienced by this category of workers. The qualitative part of the study will help to frame better the issue, detecting the main demanding aspects.
Advanced Directives in Palliative Care (DAVPAL)
End-of-lifeA prospective, single-blinded, controlled, and randomized trial to find if physician's use of the Portuguese Advance Directives, in palliative care, as a communication tool between patients and caregivers, improves the agreement and reliability between patients and their health surrogates, in their decisions about end-of-life care.
A Guide to Conservative Care
End Stage Renal DiseaseDecision Aid3 moreThis is a randomized pilot study to test the feasibility and acceptability of a patient decision aid on conservative care among older patients with advanced CKD and their close persons.
End-of-life Practices in 2019 vs. 2014
Terminal IllnessHeart Arrest2 moreIn 2014, the authors conducted a survey of key opinion leaders on ethical resuscitation practices in 31 European Countries. The authors administered a comprehensive questionnaire to 1-2 "experts" from each country; subjectivity-related bias could not be excluded; however, the questionnaire was actually administered twice over a 6-month period to all participants, in order to confirm results' reproducibility. The questionnaire spanned across the following 4 domains: A: ethical practices (41 questions); B: access to best available care (39 questions); C: death diagnosis and organ donation (22 questions); and D: emergency care organization (40 questions). Accordingly, a 142-point scoring system of the responses of the participants was developed. Country-specific scores varied widely [e.g. score range of 1-41 for the ethical practices (domain A), and of 9-32 for emergency care organization (domain D)]. The authors also found a significant association between domain A and domain D scores (r2 = 0.42, P < 0.001). The results of the 2014 survey highlighted variability across European countries in their approach to the ethics of resuscitation/end-of-life care. Results also indicated the presence of substantial need for improvements in all the aforementioned domains of practice and emergency care organization On the other hand, such evolution should be substantially augmented and accelerated by the above-described combination of new guidelines, RCT-based support of ACP, legislation / governmental policies, and educational activities. With this study the authors undertake a methodologically improved version of the 2014 survey, in order to test the following hypotheses: 1) compared to 2014, there may be significant improvements in overall domain A to D scores for 2019, reflecting improved quality of ethical practice in the field of resuscitation/end-of-life care; 2) such progress, may be more marked in countries with "low" (i.e. below-average) domain A to D scores for 2014.