Little is known about how to prepare older patients for advance care planning (ACP) discussions in primary care.
The objective of the study was to explore older patients' perspectives and experiences ...on ACP discussions with family members and/or primary care clinicians.
We conducted a qualitative interview study with 20 older patients who were involved in the clinic's ACP quality improvement initiative. We used an inductive approach to generate a coding scheme and used thematic analysis alongside a constant comparative methodology to iteratively refine emergent themes after coding the data. We used the transtheoretical behavior change model to conceptualize the process of ACP discussions, focusing on the contemplation, preparation, and action stages.
Four key themes emerged from our analyses: 1) the relevance/importance of ACP as a whole; 2) independently conceptualizing wishes and preferences for the future; 3) the process of engagement in ACP discussions; and 4) different outcomes of ACP discussions. While patients contemplated having an ACP discussion, they needed time to conceptualize their wishes on their own before documenting wishes or engaging with others. Moving to the preparation stage, patients shared their perspectives about how to engage family members and primary care clinicians in ACP discussions and reported different outcomes of these discussions, which varied according to patients' goals for ACP.
Understanding how to best prepare patients for ACP discussions from patients enrolled in an ACP primary clinic quality improvement initiative may assist primary care practices in developing interventions to improve the occurrence and effectiveness of such discussions.
Assessment tools are data collection instruments that are completed by or with patients or caregivers and which collect data at the individual patient or caregiver level.
The objectives of this study ...are to 1) summarize palliative care assessment tools completed by or with patients or caregivers and 2) identify needs for future tool development and evaluation.
We completed 1) a systematic review of systematic reviews; 2) a supplemental search of previous reviews and Web sites, and/or 3) a targeted search for primary articles when no tools existed in a domain. Paired investigators screened search results, assessed risk of bias, and abstracted data. We organized tools by domains from the National Consensus Project Clinical Practice Guidelines for Palliative Care and selected the most relevant, recent, and highest quality systematic review for each domain.
We included 10 systematic reviews and identified 152 tools (97 from systematic reviews and 55 from supplemental sources). Key gaps included no systematic review for pain and few tools assessing structural, cultural, spiritual, or ethical/legal domains, or patient-reported experience with end-of-life care. Psychometric information was available for many tools, but few studies evaluated responsiveness (sensitivity to change) and no studies compared tools.
Few to no tools address the spiritual, ethical, or cultural domains or patient-reported experience with end-of-life care. While some data exist on psychometric properties of tools, the responsiveness of different tools to change and/or comparisons between tools have not been evaluated. Future research should focus on developing or testing tools that address domains for which few tools exist, evaluating responsiveness, and comparing tools.
Background:
Despite increased focus on measuring and improving quality of serious illness care, there has been little emphasis on the primary care context or incorporation of the patient perspective.
...Objective:
To explore older patients’ perspectives on the quality of serious illness care in primary care.
Design:
Qualitative interview study.
Participants:
Twenty patients aged 60 or older who were at risk for or living with serious illness and who had participated in the clinic’s quality improvement initiative.
Methods:
We used a semistructured, open-ended guide focusing on how older patients perceived quality of serious illness care, particularly in primary care. We transcribed interviews verbatim and inductively identified codes. We identified emergent themes using a thematic and constant comparative method.
Results:
We identified 5 key themes: (1) the importance of patient-centered communication, (2) coordination of care, (3) the shared decision-making process, (4) clinician competence, and (5) access to care. Communication was an overarching theme that facilitated coordination of care between patients and their clinicians, empowered patients for shared decision-making, related to clinicians’ perceived competence, and enabled access to primary and specialty care. Although access to care is not traditionally considered an aspect of quality, patients considered this integral to the quality of care they received. Patients perceived serious illness care as a key aspect of quality in primary care.
Conclusions:
Efforts to improve quality measurement and implementation of quality improvement initiatives in serious illness care should consider these aspects of care that patients deem important, particularly communication as an overarching priority.
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