Journal of pain and symptom management
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J Pain Symptom Manage · Feb 2025
Impact of Diagnosis Nondisclosure on Quality of Dying in Cancer Patients: A Bereavement Study.
Patients should be optimally informed about their illness for patients' autonomy and shared decision-making. However, diagnosis nondisclosure to patients is traditionally widespread in Japanese culture with family-oriented autonomy. There is insufficient research on quality of death (QOD) and quality of care (QOC) among patients who are not told their diagnosis. ⋯ We demonstrated that overall QOD and QOC in decedents with cancer were significantly higher in decedents with explicit cancer diagnoses. Furthermore, bereaved family members' outcomes were better among the family members of decedents with an explicit cancer diagnosis.
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J Pain Symptom Manage · Feb 2025
Case ReportsHypothalamic Hyperphagia in the Hospice Patient: Case Report and Discussion.
We present a case of insatiable appetite and harmful overeating in a hospice patient that showcases the burden of hypothalamic hyperphagia, a rare complication of brain cancer. While confounders exist such as progression of disease and prior tapering of dexamethasone, in this case the initiation of metformin was associated with substantial appetite reduction and resolution of our patient's debilitating food-seeking behaviors. We will explore metformin as a potential cost-effective option for palliation in a hospice setting and explore some of the physiologic mechanisms involved.
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J Pain Symptom Manage · Feb 2025
The distress and benefits of the Bereaved Family Survey: A mortality follow-back survey.
The Bereaved Family Survey is an important method for evaluating the quality of palliative care. ⋯ Bereaved family members experience both distress and benefits. There is need to devise ways to reduce distress and increase its benefits to continue assessing the quality of palliative care.
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J Pain Symptom Manage · Feb 2025
Electronic Health Record Serious Illness Conversation Dashboards: An Implementation Case Series.
Dashboards are used to track and visualize quality indicators within health systems to improve clinical performance. Structured serious illness conversation (SIC) documentation templates within electronic health records (EHR) have enabled the development of SIC dashboards for quality improvement. Little is known about the successes and challenges of SIC dashboards. ⋯ Dashboards can be powerful tools for identifying gaps in SIC and driving interventions for clinician practice change. However, challenges related to clinician adoption of structured templates for SIC documentation and mixed clinician receptivity to data feedback may limit their reliability and use.
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J Pain Symptom Manage · Feb 2025
Sights and Sounds of Respiratory Changes During Hospice Death Vigils: Hospice Caregivers Experience.
Research has documented common respiratory changes at the end of life for hospice patients. Some studies have noted these symptoms as distressing and challenging for families, and as a potential reason for emergency room visits and hospice benefit revocation. However, the experiences and emotions of family members regarding these respiratory changes in the final days, particularly when they are alone in a home setting, are not well documented. A recent study found 51% caregivers identified abnormal breathing as a challenge during their vigil experience. ⋯ Opportunities exist for hospice agencies to better address the caregiver distress caused by witnessing noisy breathing (death rattle), Cheyne-Stokes breathing, and agonal breathing. Further research is needed to identify standard definitions for these respiratory changes, their prevalence in the home hospice setting, and to develop practice standards and effective interventions to relieve caregiver distress.