At the crossroads of religion and palliative care in patients with dementia

Abstract The timing of palliative care initiation may be more appropriately directed using a needs-based approach, instead of a prognostically driven one. Jewish Law or Halachah (“the way”) upholds a strong commitment to the sanctity of life and teaches that the duty to prolong life supersedes the duty to end suffering prematurely, unless one is expected to imminently die. This intersection of palliative care and a reliance on prognostic triggers with an individual’s observance of religious traditions complicates matters nearing the end-of-life. A recent pilot study by Sternberg et al. of 20 patients with advanced dementia in Israel found that home hospice care significantly reduced distressing symptoms, caregiver burden and hospitalization and teaches us important lessons about some of the essential elements to providing excellent palliative care at home, including the 24/7 availability of healthcare providers outside of the emergency department. In light of specific religious practices, palliative care should strive to incorporate a patient’s specific religious observance as part of high-quality end-of-life care

Biobanking in Israel 2016–17; expressed perceptions versus real life enrollment

Abstract Background As part of the preparations to establish a population-based biobank in a large Israeli health organization, we aimed to investigate through focus groups the knowledge, perceptions and attitudes of insured Israelis, toward biobanking, and then, after input from focus groups’ participants, to empirically assess the impact of a revised recruitment process on recruitment rates. Methods 1) Six Focus group discussions were conducted (n = 10 per group) with individuals who had routine blood laboratory tests taken in the last 2 years. 2) After addressing the issues raised in the focus groups and revising the recruitment process, individuals undergoing routine blood tests in phlebotomy clinics (N = 10,262) were invited to participate in the future biobank. Results At the outset of the focus groups there was an overall positive response to the prospect of a population-based biobank. Concerns revolved around infringement on privacy, fears of the “big brother”(e.g. insurance companies), and anxiety about inequality. Reaction to the language of the informed consent document revolved around concerns over ability to maintain anonymity, to withdraw consent, involvement of commercial entities, and the general tenor of the informed consent, which was perceived as legalistic and unilateral. In general, the longer participants were exposed to discussion about the biobank, the less likely they were to consent to sign in. Overall, only 20% (12) of the 60 participants stated they would agree to sign in by the end of the 2 hour group session. The feedback obtained from the focus groups was used in the second stage (“real life”) of the study. A team of recruiters received extensive training to enable fruitful discussion and a detailed explanation to questions and concerns raised during the recruitment process. During the second stage of the study, after revising the consent form and training recruiters, a 53% consent rate was observed among 10,262 participants, more than 4 fold higher than estimated at the focus group stage. Conclusions The qualitative focus group research helped identify important perceptions and concerns, which were subsequently addressed in the revised consent form and in the discussion the recruiters had with potential biobank donors

Dissociating medial temporal and basal ganglia systems with a latent learning task.

The medial temporal (MT) lobes and basal ganglia have both been implicated as brain substrates of associative learning. Here, we show a dissociation between medial temporal and basal ganglia damage using a latent learning task, in which prior exposure to cues, uncorrelated with each other, slows subsequent learning of an association between them. Consistent with prior work, we found a robust exposure effect in healthy controls, with exposed controls learning more slowly than non-exposed controls. This effect was abolished in medial temporal amnesia: both exposed and non-exposed amnesic patients learned at the same speed. A group of patients with basal ganglia damage due to Parkinson’s disease showed a reversal of the effect: exposed subjects learned faster than non-exposed subjects. Our findings point to distinct and dissociable contributions of medial temporal lobe and basal ganglia structures to learning and memory

Additional file 1: of Biobanking in Israel 2016–17; expressed perceptions versus real life enrollment

Original consent form, as presented to focus group participants. (DOCX 17 kb

Additional file 2: of Biobanking in Israel 2016–17; expressed perceptions versus real life enrollment

Updated consent form and additional information as used in real-life recruitment study. (DOCX 31 kb