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Background: Breathlessness is a common symptom for palliative patients that can cause distress and decrease function and quality of life. Palliative care services in Australia aim to routinely assess patients for breathing-related distress, but timely reassessment is not always achieved. Objective: o improve the timeliness of breathlessness reassessment in a home-based community palliative care service in New South Wales for people with moderate-to-severe breathing-related distress. Breathing-related distress was defined as a Symptom Assessment Score for "breathing problems" of four or more. T This collaborative quality improvement (QI) project between SPHERE Palliative Care CAG, Stanford University mentors, and a Sydney metropolitan specialist palliative care service included a: (1) retrospective chart audit; (2) cause and effect analyses using a fishbone diagram; (3) development and implementation of key drivers and interventions; and (4) a pre-and-post evaluation of the timeliness of reassessment of breathing-related distress and changes in Symptom Assessment Scale scores for "breathing problems." Methods: Key interventions included multidisciplinary education sessions to facilitate buy-in, with nurses as case managers responsible for breathlessness reassessment and documentation of scores, access and training in electronic palliative care data entry software, fortnightly monitoring and reporting of breathing-related distress scores, and development of an educational flowchart. The proportion of patients reassessed within seven days of an initial nursing assessment of moderate-to-severe breathing-related distress increased from 34% at baseline to 92% at six months. Results: A local QI project increased the proportion of patients with a timely reassessment of their breathing-related distress in a community palliative care service. Conclusion: A local QI project increased the proportion of patients with a timely reassessment of their breathing-related distress in a community palliative care service.

Obtaining informed consent is a key protection that should be afforded universally to people using health services and the basis around which any participation in clinical trials is built. Randomized controlled effectiveness studies are necessary to answer key questions in hospice and palliative care, in order to help systematically improve the quality of care. In order to be properly generalizable, such trials need to have broad inclusion criteria to reflect the population most likely to be affected by the condition. The inclusion of patients who are seriously ill, and therefore potentially vulnerable, requires careful exploration of ethical and legal principles that underpin informed consent. Specific challenges in obtaining informed consent for randomised clinical trials (RCTs) in clinically unstable populations such as hospice and palliative care include higher rates of people with impaired cognitive capacity as well as interventional studies in clinical situations which may present as a sudden change in condition. None of these challenges is unique to hospice and palliative care research, but the combination and frequency with which they are encountered require systematic and considered solutions. This article outlines five different ethically valid consent approaches and discusses their applicability to hospice and palliative care research trials. These include: consent by the patient (at the time of enrolment, in advance of the study, or delayed until after the study has commenced); a proxy (or legally authorised representative); or a consent waiver. Increased use of the less traditional modes of informed consent may lead to greater participation rates in hospice and palliative care trials, thereby improving the evidence base more rapidly in part by better reflecting the population served and hence improving generalizability.

Background: Noisy respiratory secretions (NRS) at the end of life have been described in 23%-92% of deaths in palliative care units. Despite limited evidence to support the efficacy of the antisecretory medications, hyoscine hydrobromide and glycopyrrolate, administration of these medications remains standard palliation. Predicting those at risk of NRS could allow early and targeted intervention., Methods: A retrospective analysis of 199 deaths in a palliative care unit was undertaken to identify if any patient, disease, or treatment-related factors might be predictive or protective of the symptom., Results: In the last 72 hours of life, 60% received antisecretory medication (mean, 2; range, 0-16 doses). Significant unadjusted associations were found between administration of antisecretory medications and survival as well as the anticholinergic drug load from other medications. Results obtained from logistic regressions revealed patients with a higher anticholinergic load from prescribed medications were more likely to require treatment for NRS (odds ratio [OR]=2.9, 95% confidence interval [CI]=1.4-5.7). There were no other factors significantly associated with developing the symptom., Conclusion: A high anticholinergic load from medications was not protective and instead predicted the need for treatment for NRS at the end of life.