Journal of palliative medicine
-
Randomized Controlled Trial
Can Persons with Dementia Meaningfully Participate in Advance Care Planning Discussions? A Mixed-Methods Study of SPIRIT.
Background: Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare. Objective: We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score ≥13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP. Design: A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted. Patient-surrogate dyads were randomized to SPIRIT in person (in a private room in a memory clinic) or SPIRIT remote (via videoconferencing from home). Setting/Subjects: Twenty-three dyads of PWDs and their surrogates were recruited from an outpatient brain health center. ⋯ While decision-making capacity was higher in PWDs who articulated their wishes very coherently, MoCA scores did not differ by articulation levels. PWDs and surrogates perceived SPIRIT as beneficial, but the preparedness outcomes did not change pre-post. Conclusions: SPIRIT engaged PWDs and surrogates in meaningful ACP discussions, but requires testing of efficacy and long-term outcomes.
-
Randomized Controlled Trial
Symptom Assessment in Patients with Advanced Cancer: Are the Most Severe Symptoms the Most Bothersome?
Objective: We investigated correspondence between symptom severity and symptom bothersomeness in patients with advanced cancer. Background: Symptom severity is commonly assessed in clinical cancer settings, but bothersomeness of these symptoms is less often measured. Methods: Participants with advanced cancer enrolled in a cluster-randomized trial of early palliative care completed the Edmonton Symptom Assessment System (ESAS) and the quality of life at the end of life (QUAL-E) measure as part of their baseline assessment. For each symptom, we examined the correspondence between the symptom being indicated as most severe on the ESAS and rated as most bothersome on the QUAL-E. Results: For the 386 patients who completed relevant sections of the ESAS and QUAL-E, tiredness (32.8%), sleep (23.8%), and appetite (20.2%) were most frequently rated as most severe, whereas pain (28.9%) and tiredness (24.3%) were most frequently indicated as most bothersome. ⋯ The probability that patients rating a symptom as most severe would also rate it as most bothersome was highest for pain (66%), nausea (58%), and tiredness (40%). Discussion: ESAS symptom severity does not necessarily indicate patients' most bothersome symptom; regardless of severity, pain and tiredness are most frequently perceived as most bothersome. Further research should investigate the clinical benefits of patients also indicating their three most bothersome ESAS symptoms.
-
Randomized Controlled Trial
Expanding Access to Home-Based Palliative Care: A Randomized Controlled Trial Protocol.
Introduction: Studies show that home-based palliative care (HBPC) improves participant outcomes and satisfaction with care while also decreasing hospitalizations and emergency department visits. U. S. health care payment reforms create financial opportunities to offer HBPC. ⋯ These include engaging primary care providers in the study and coordinating logistics with a health plan. Both challenges have contributed to a lag in participant enrollment. Despite these challenges, our study holds tremendous promise to accelerate adoption and spread of an evidence-based HBPC model across the country.
-
Randomized Controlled Trial Multicenter Study Comparative Study
A Multicenter, Randomized Controlled Trial of Perioperative Palliative Care Surrounding Cancer Surgery for Patients and Their Family Members (PERIOP-PC).
Background: Despite positive outcomes associated with specialist palliative care (PC) in diverse medical populations, little research has investigated specialist PC in surgical ones. Although cancer surgery is predominantly safe, operations can be extensive and unpredictable perioperative morbidity and mortality persist, particularly for patients with upper gastrointestinal (GI) cancers. Objectives and Hypotheses: Our objective is to complete a multicenter, randomized controlled trial comparing surgeon-PC co-management with surgeon-alone management among patients pursuing curative-intent surgery for upper GI cancers. ⋯ Caregiver: quality of life, caregiver burden, spiritual distress, and prognostic awareness. Intent-to-treat analysis will be used. Ethics and Dissemination: This study has been approved by the institutional review boards of all study sites and is registered on clinicaltrials.gov (NCT03611309, First received: August 2, 2018).
-
Randomized Controlled Trial Comparative Study
Development of an Outpatient Palliative Care Protocol to Monitor Fidelity in the Emergency Medicine Palliative Care Access Trial.
Introduction: Palliative care is recommended for patients with life-limiting illnesses; however, there are few standardized protocols for outpatient palliative care visits. To address the paucity of data, this article aims to: (1) describe the elements of outpatient palliative care that are generalizable across clinical sites; (2) achieve consensus about standardized instruments used to assess domains within outpatient palliative care; and (3) develop a protocol and intervention checklist for palliative care clinicians to document outpatient visit elements that might not normally be recorded in the electronic heath record. ⋯ Implementation: The protocol and checklist are being used to document the contents of each outpatient palliative care visit conducted as a part of the Emergency Medicine Palliative Care Access (EMPallA) trial. Variation across palliative care team staffing, clinic session capacity, and physical clinic model presents a challenge to standardizing the delivery of outpatient palliative care.