BACKGROUND: To evaluate the effectiveness of delivering feedback reports to increase completion of LST notes among VA Home Based Primary Care (HBPC) teams. The Life Sustaining Treatment Decisions Initiative (LSTDI) was implemented throughout the Veterans Health Administration (VHA) in the United States in 2017 to ensure that seriously ill Veterans have care goals and LST decisions elicited and documented.
METHODS: We distributed monthly feedback reports summarizing LST template completion rates to 13 HBPC intervention sites between October 2018 and February 2020 as the sole implementation strategy. We used principal component analyses to match intervention to 26 comparison sites and used interrupted time series/segmented regression analyses to evaluate the differences in LST template completion rates between intervention and comparison sites. Data were extracted from national databases for VA HBPC in addition to interviews and surveys in a mixed methods process evaluation.
RESULTS: LST template completion rose from 6.3 to 41.9% across both intervention and comparison HBPC teams between March 1, 2018, and February 26, 2020. There were no statistically significant differences for intervention sites that received feedback reports.
CONCLUSIONS: Feedback reports did not increase documentation of LST preferences for Veterans at intervention compared with comparison sites. Observed increases in completion rates across intervention and comparison sites can likely be attributed to implementation strategies used nationally as part of the national roll-out of the LSTDI. Our results suggest that feedback reports alone were not an effective implementation strategy to augment national implementation strategies in HBPC teams.

Creutzfeldt-Jacob disease (CJD) is a rare neurodegenerative disorder that typically progresses rapidly and unrelentingly. Providing comfort and support for patients with CJD presents significant challenges for clinicians and caregivers. In comparison to the more typical disease progression experienced in dementias, the trajectory of CJD differs significantly. This case report delves into these differences and emphasizes the need for the development of guidelines for healthcare professionals and families who care for individuals with CJD. Such guidelines would help facilitate better care and support for patients and their families throughout the course of this devastating illness.

OBJECTIVE: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention.
METHODS: A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom.
RESULTS: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery.
CONCLUSIONS: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.

In the intensive care unit, it can be challenging to determine which interventions align with the patients\' preferences since patients are often incapacitated and other sources, such as advance directives and surrogate input, are integral. Managing treatment decisions in this context requires a process of shared decision-making and a keen awareness of the preference-sensitive instances over the course of treatment. The present paper examines the need for the development of preference-sensitive decision timelines, and, taking aneurysmal subarachnoid hemorrhage as a use case, proposes a model of one such timeline to illustrate their potential form and value. First, the paper draws on an overview of relevant literature to demonstrate the need for better guidance to (a) aid clinicians in determining when to elicit patient preference, (b) support the drafting of advance directives, and (c) prepare surrogates for their role representing the will of an incapacitated patient in clinical decision-making. This first section emphasizes that highlighting when patient (or surrogate) input is necessary can contribute valuably to shared decision-making, especially in the context of intensive care, and can support advance care planning. As an illustration, the paper offers a model preference-sensitive decision timeline-whose generation was informed by existing guidelines and a series of interviews with patients, surrogates, and neuro-intensive care clinicians-for a use case of aneurysmal subarachnoid hemorrhage. In the last section, the paper offers reflections on how such timelines could be integrated into digital tools to aid shared decision-making.

OBJECTIVE: Generalist palliative care in hospital departments largely lacks an overall structure to fully manage the symptom burden and support needs of patients with incurable gastrointestinal cancer. Palliative care case management interventions show promising results in reducing healthcare use and enhancing quality of life. Less is known about these interventions and their potential to improve the quality of generalist palliative care in hospital departments. The aim of this study was to explore patients\' experience of a palliative care case management intervention (PalMaGiC) to acquire knowledge about its advantages and disadvantages and, if needed, adjust the intervention.
METHODS: Qualitative semi-structured interviews with patients (n = 14) with incurable gastrointestinal cancers of the oesophagus, pancreas, colon, or rectum were conducted and analysed using content analysis. Participants in the study were affiliated with PalMaGiC, an intervention in a gastroenterology department based on symptom assessment, care planning, care coordination, and needs-based follow-up.
RESULTS: Participants perceived the intervention as filling a gap and as a secure lifeline in the healthcare system since it provided 24-h access, a designated specialist nurse, and a patient-healthcare alliance. Using a needs-based approach, PalMaGiC changed the participants\' focus from disease to quality of life. Participants requested more open dialog within complementary and alternative medicine, greater focus on promoting hope and using need assessment questionnaires differently in assessing symptoms and problems.
CONCLUSIONS: The PalMaGiC intervention can potentially meet the needs of patients requiring palliative care in hospital departments, but further development of the content and personalised approach is needed.

暂无摘要。

Unrepresented patients-people without capacity to make medical decisions who also lack a surrogate decision-maker-form a large and vulnerable population within the United States health care system. The burden of unrepresentedness has rightly prompted widespread calls for more and better advance care planning, in which still-healthy patients are encouraged to designate a surrogate decision-maker and thus avoid the risk of becoming unrepresented. However, we observe that some patients, even with available social contacts and access to adequate advance care planning services, simply decline to name a surrogate decision-maker. We propose a novel concept of \"informed refusal of representation\" (\"IRR\") to characterize the position held by some such patients, who are often overlooked in prior work on unrepresentedness. We then discuss physicians\' ethical obligations in the face of such a refusal and avenues by which physicians can support patients without surrogates in receiving goal-concordant care.

Identifying ethical concerns with ML applications to healthcare (ML-HCA) before problems arise is now a stated goal of ML design oversight groups and regulatory agencies. Lack of accepted standard methodology for ethical analysis, however, presents challenges. In this case study, we evaluate use of a stakeholder \"values-collision\" approach to identify consequential ethical challenges associated with an ML-HCA for advanced care planning (ACP). Identification of ethical challenges could guide revision and improvement of the ML-HCA.
We conducted semistructured interviews of the designers, clinician-users, affiliated administrators, and patients, and inductive qualitative analysis of transcribed interviews using modified grounded theory.
Seventeen stakeholders were interviewed. Five \"values-collisions\"-where stakeholders disagreed about decisions with ethical implications-were identified: (1) end-of-life workflow and how model output is introduced; (2) which stakeholders receive predictions; (3) benefit-harm trade-offs; (4) whether the ML design team has a fiduciary relationship to patients and clinicians; and, (5) how and if to protect early deployment research from external pressures, like news scrutiny, before research is completed.
From these findings, the ML design team prioritized: (1) alternative workflow implementation strategies; (2) clarification that prediction was only evaluated for ACP need, not other mortality-related ends; and (3) shielding research from scrutiny until endpoint driven studies were completed.
In this case study, our ethical analysis of this ML-HCA for ACP was able to identify multiple sites of intrastakeholder disagreement that mark areas of ethical and value tension. These findings provided a useful initial ethical screening.

This study provides insight into circumstances that facilitate or hamper living at home with advanced dementia until the end of life. Interviews were held with 11 bereaved family caregivers, two general practitioners, and nine case managers, related to a total of 12 persons with advanced dementia who had recently died. Persons with dementia who lived at home until the end of life often had family caregivers that received timely support from professionals and their social network. In the cases where the person with dementia could not live at home until the end of life, safety issues, severely challenging behavior, and high care dependency of the person with dementia played key roles. Case management and a continuous process of advance care planning will improve the chance that the end-of-life setting is in accordance with the key values and needs of both the person with dementia and family caregivers.

Many NICUs have reached an inflection point where infant deaths following limitation of life-sustaining treatments outnumber those following unsuccessful resuscitations, and many infants who survive continue to require intensive supports. Families of such infants with serious illness may benefit from a standardized, process-oriented approach in decisional-support. Advance care planning (ACP), or communication that supports patients, or their surrogate decision-makers, in sharing values, goals, and preferences for future medical care, is recognized as a valuable strategy in supporting adults with serious and chronic illness. Although the role of ACP in older children and adolescents is evolving, its utility has not been systematically explored in the perinatal context. This article builds a case for formalizing a role for ACP in the NICU by defining ACP and appraising recent outcomes research, reviewing the current state of parental needs for decisional support and serious illness in the NICU, and describing how ACP may address current limitations in primary and specialty pediatric palliative care and challenges for decision-making in the newborn period.