Journal of palliative medicine
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Randomized Controlled Trial
Me & My Wishes: Concordance of End-of-Life Preferences Between Residents with Dementia, Family, and Staff.
Objective: Me & My Wishes involves videos of persons living with dementia talking about their end-of-life (EOL) care preferences. This study aimed to examine the concordance of EOL treatment and psychosocial preferences expressed by assisted living community and nursing home residents in these videos with family and staff knowledge of preferences. Design: Randomized wait-list control. ⋯ Conclusion: Our findings indicate that sharing Me & My Wishes videos improved family and staff concordance of EOL psychosocial and treatment preferences for assisted living and nursing home residents living with dementia. Personalized videos conveying resident preferences can help informal and formal caregivers understand the resident as a person and foster concordant care. Clinical Trial Registration Number NCT03861429.
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How decisions are made and patients cared for are often guided by the Golden Rule, which would have us treat patients as we would want to be treated in similar circumstances. But when patients' lived experiences and outlooks deviate substantively from our own, we stop being a reliable barometer of their needs, values, and goals. ⋯ In those instances, The Platinum Rule, which would have us consider doing unto patients as they would want done unto themselves, may be a more appropriate standard for achieving optimal person-centered care. This means knowing who patients are as persons, hence guiding treatment decisions and shaping a tone of care based on compassion and respect.
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Background: There is a pressing need for standardized measures to assess the quality of home-based serious illness care. Currently, there are no validated quality measures that are specific to home-based serious illness programs (SIPs) and the unique needs of their patients. Objective: To develop and evaluate standardized survey-based measures of serious illness care experiences for assessing and comparing quality of home-based serious illness care programs. ⋯ Together, the composites explained 45% of the variance in patients' overall care ratings. Communication, Care Coordination, and Planning for Care were the strongest predictors of overall ratings. Conclusion: Our analyses provide evidence of the feasibility, reliability, and validity of proposed survey-based measures to assess the quality of home-based serious illness care from the perspective of patients and their families.
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Multicenter Study Observational Study
Analyzing Differences in Perception between Oncologists and Patients to Adapt Pharmacological Treatment for Breakthrough Cancer Pain: Observational ADAPTATE Study.
Background: Transmucosal fentanyl (TF), used for breakthrough cancer pain (BTcP) treatment, has different formulations with distinctive attributes. The hypothesis is that, in shared decision making for the prevention of certain therapeutic problems, doctors and patients assign different value to the characteristics of treatment options. Aim: The aim of this study was to assess the discordance between the oncologists' opinion of attributes of TF and patients' expectations in BTcP treatment. ⋯ Conclusion: Our results confirm that some aspects that most concern patients about the treatment of BTcP differ from those to which oncologists attach most importance. Increased patient awareness and education about BTcP and its treatment could lead to greater satisfaction and better patient involvement in therapeutic decisions. Certain barriers need to be overcome, such as lack of time in consultations and poor communication skills of oncologists that hinder patient health education.