Palliative Medicine最新文献

Background: Many patients with advanced cancer are unaware of their limited prognosis, however little is known about the change in awareness during the last year of their lives.

Aim: To investigate changes in the perception of prognosis in the last year of life of patients with advanced cancer and its associated factors.

Design: Prospective, longitudinal, multicentre, observational study in patients with advanced cancer (eQuiPe). Patients completed 3-monthly follow-up questionnaires until death.

Setting/participants: Adult patients diagnosed with advanced cancer were recruited by their treating physician or self-enrolled in one of the forty Dutch hospitals. Only deceased patients with available prognostic data were included for analysis (n = 801).

Results: Perception of prognosis changes in the last year of life with an increase in the percentage of patients who are aware of their limited prognosis (from 15% to 40%). Especially in the last 6 months of life, most of the changes were towards a more realistic perception of prognosis. Patients who did not want to know their prognosis remained relatively stable in their wish not to know (range: 14%-18%). Time to death was associated with having a perception of prognosis of < 1 year, >1 year or not knowing the prognosis, but was not associated with not wanting to know the prognosis.

Conclusion: Becoming aware of their limited prognosis may make patients with advanced cancer more receptive to start end-of-life discussions. Although some patients prefer not to know their prognosis, it remains important to respectfully explore their preferences and wishes for end-of-life care.

Background: Integrated multidisciplinary care is required to manage the progressive and debilitating symptoms associated with motor neurone disease. Professionals can find providing the level of care required by this population clinically and emotionally challenging. To support those working with these patients it is important to understand the experience of the entire multidisciplinary team involved and the impact of working with motor neurone disease on their emotional and psychological well-being.

Aim: To identify what is known about (1) healthcare professionals' experience of working with motor neurone disease and (2) the impact of this work on their emotional and psychological well-being.

Design: Scoping review. Review protocol registered on Open Science Framework.

Sources: Five electronic databases were searched in January 2023 and 2024. Grey literature and hand searches were completed.

Results: Fifty-one sources published between 1990 and 2023 were included. A total of 1692 healthcare professionals are represented. Three main categories were identified: (1) The demands of providing motor neurone disease care. (2) Factors influencing professionals' ability to provide desired levels of care. (3) The emotional impact of working with motor neurone disease. Subcategories are depicted within these.

Conclusion: Positive experiences included job satisfaction, enhanced perspective and receiving gratitude, while negative implications such as stress, emotional exhaustion and burnout also featured. The demands of motor neurone disease patient care, the organisation of services and resources required to meet patient and family needs and the emotional burden for professionals involved, warrant greater recognition in clinical practice, guidelines and future research.

Background: Within hospice and palliative care, professionals from various disciplines collaborate to deliver comprehensive care to terminal patients and their relatives. Regional hospice and palliative care networks exist in various countries, aimed at facilitating cooperation among health care providers at a local level. To date, little is known about the challenges faced by these networks.

Aim: This study aimed to explore the challenges faced by regional hospice and palliative care networks in Germany.

Design: A qualitative study with n = 6 group discussions was conducted. Group discussions were recorded, transcribed verbatim and analysed using qualitative content analysis.

Setting/participants: Participants were n = 19 coordinators or leaders of regional hospice and palliative care networks in Germany or persons with theoretical expertise about these structures.

Results: Regional hospice and palliative care networks face numerous challenges relating to: (1) establishment and development, (2) infrastructure, (3) moderation, (4) public relations and information exchange, (5) education and training and (6) the development of regional care services and practices. Network moderation appears crucial for network success and is highly dependent on infrastructural conditions. A key challenge is gaining network acceptance and support from potential network partners. Specifically, this includes securing the commitment of network partners to agree on common goals, develop joint actions and standards and allocate resources effectively.

Conclusions: Sustainable infrastructure, competent network governance and adequate resources for network members are essential for the success of regional hospice and palliative care networks. To improve networking, funding conditions should be simplified, the involvement of network partners should be improved and network coordinators should receive training in network management.

Background: Pleural mesothelioma is a rare and incurable cancer, with complex physical and psychological symptoms. Despite recent advances in treatment, prognosis remains poor (average 8-15 months) with a lack of research on palliative and end-of-life care.

Aim: To examine markers suggestive of quality palliative and end-of-life care, including receipt of specialist palliative care, advance care planning, fewer unplanned hospital admissions at end-of-life. To compare variables with socio-economic position to identify if inequalities exist.

Design: A cohort study, retrospectively reviewing the medical notes from diagnosis to death for all patients diagnosed with pleural mesothelioma between 01/01/2016 and 31/12/2021.

Setting/participants: Over 5 years, n = 181 patients were diagnosed with pleural mesothelioma across Teesside (north-east England), n = 30 were alive at study commencement and excluded. For the 151-patient cohort, demographics were as follows: 92% male, 79% aged 70-89 years and 26% in the lowest socio-economic quintile (based on area-level deprivation).

Results: Median survival was 246 days. Within the final 90 days of life, 69% of patients had at least 1 unplanned hospital admission, with 20% having 3+ (range 0-7). Those with the highest socio-economic position had less admissions on average. Specialist palliative care was received by patients, at home 34%, in hospital 26%, in hospice 11%. Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions, were in the final 24 h of life for 18% of patients (median 7 days). Disease specific findings included police attendance for expected deaths and lack of signposting.

Conclusion: Patients with pleural mesothelioma have unplanned admissions to hospital towards the end of life, with possible inequalities; they receive late advance care planning and face challenges unique to their disease. It is important that patients receive high quality palliative end-of-life care through accessing specialist palliative care or have guidance/signposting to other potential sources of support.

Background: Experience sampling methods typically involve multiple self-report assessments per day over consecutive days. Unlike traditional patient-reported outcome measures or interviews, such methods offer the possibility to capture the temporal fluctuations of experiences in daily environments, making them valuable for studying the daily lives of people with advanced illness. Yet, their use in palliative care research is limited.

Aims: To introduce experience sampling methods to the field of palliative care as a valuable tool for studying the everyday experiences of people with advanced illness, and to present the findings of an experience sampling methods pilot study with people with advanced breast or advanced lung cancer.

Evidence used to support the information presented: We draw on published health research using experience sampling methods. We present a newly developed experience sampling methods questionnaire (ESM-AC) and report pilot study findings on the feasibility and acceptability of experience sampling methods among people with advanced breast or lung cancer.

Key learning points: Experience sampling methods hold potential to uncover the dynamics of everyday experiences of people with advanced illness. The methods offer considerable flexibility and options to answer a variety of research questions, but consideration is required regarding sampling protocols and participant burden. We showed appropriate feasibility and acceptable participant burden of the methods among people with advanced breast or advanced lung cancer.

Background: People in receipt of community palliative care usually receive care from a range of services and require access to care 24/7. However, care outside of normal working hours varies, with little understanding of which models of care are optimal.

Aim: To identify and characterise current models of out-of-hours community palliative care in the UK and explore healthcare professionals' views on the barriers and facilitators to providing high quality community out-of-hours care.

Design: Exploratory qualitative study using semi-structured interviews, analysed using reflexive thematic analysis.

Setting and participants: We recruited 39 healthcare professionals from 20 geographic areas. Participants were service leads from community palliative care, district/community nursing and primary care providers.

Results: Four overarching models of out-of-hours palliative care identified, characterised by levels of integration between services, balance between generalist and specialist providers, availability of care and type of care provided (hands-on clinical care/ advisory care). Analysis of barriers and facilitators generated three themes: (1) 'It's never one service': challenges of coordination of care across multiple services, (2) Need for timely skilled management of distressing symptoms, (3) 'We're just plugging gaps': prioritising patient care within limited resources. Patterns within the themes varied across the four models.

Conclusion: This study identifies key characteristics of four common models of out-of-hours palliative care, from the perspectives of professionals. Facilitators of high quality out-of-hours care include: a palliative care specific single point of access for patients; formal structures to integrate generalist/specialist services; and timely/skilled management of symptoms. We provide recommendations for a potential model incorporating these factors.

Background: Physicians have significant influence on end-of-life decisions. Therefore, it is important to understand the connection between physicians' personal end-of-life care preferences and clinical practice, and whether there is congruence between what they prefer for themselves and for patients.

Aim: Study to what extent physicians believe their personal end-of-life preferences impact their clinical practice and to what extent physicians' personal treatment option preferences differ from what they prefer for their patients.

Design: A cross-sectional survey was conducted from May 2022 to February 2023.

Setting/participants: Eight jurisdictions: Belgium, Italy, Canada, USA (Oregon, Wisconsin, and Georgia), and Australia (Victoria and Queensland). Three physician types were included: general practitioners, palliative care physicians, and other medical specialists.

Results: We analyzed 1157 survey responses. Sixty-two percent of physicians acknowledge considering their own preferences when caring for patients at the end of life and 29.7% believe their personal preferences impact the recommendations they make. Palliative care physicians are less likely to consider their own preferences when caring for and making recommendations to patients. Congruence was found between what physicians prefer for patients and themselves with cardiopulmonary resuscitation considered "not a good option for both" by 99.1% of physicians. Incongruence was found with physicians considering some options "not good for the patient, but good for themselves"-palliative sedation (8.3%), physician-assisted suicide (7.0%), and euthanasia (11.6%).

Conclusion: Physicians consider their own preferences when providing care and their preferences impact the recommendations they make to patients. Incongruence exists between what physicians prefer for themselves and what they prefer for patients.

Background: Xerostomia is a common and difficult symptom experienced by patients with cancer. Pilocarpine is a cholinergic agent that stimulates salivation.

Aim: To assess the feasibility of conducting a N-of-1 trial to determine the efficacy of pilocarpine orally dissolving tablets in patients with xerostomia.

Design: Double-blind, crossover, placebo-controlled N-of-1 trials of 5 mg pilocarpine tablets vs placebo. Each trial consisted of three 6-day cycles containing pilocarpine (3 days) and placebo (3 days) in random order.

Setting/participants: Participants with advanced cancer and xerostomia (scoring >3 on an 11-point numerical rating scale) from any cause, were recruited from an inpatient and outpatient palliative care unit in Brisbane, Australia.

Results: Eighteen people were recruited in 17 months. Nine withdrew, seven before or during the first 4 days. Three withdrew due to unacceptable side effects. Two participants met the definition of response (⩾2 point reduction in mean scores active vs placebo cycles). When assessing individual cycles, 15 out of 27 cycles (56%) met the definition of response. More people reported at least one mild episode during pilocarpine than placebo of nausea (6 vs 3), vomiting (3 vs 0) and sweating (3 vs 2). About 48% of adverse event classifications were reported in placebo cycles only.

Conclusion: Recruitment to an N-of-1 trial for xerostomia is feasible but attrition was high (50%). Early dropout may have been due to the trial length, complexity, appropriateness or number of questionnaires. Adverse events were generally mild. Two of 10 participants were considered to have benefited from pilocarpine warranting ongoing treatment.