Implementation and Effectiveness of Integrating Palliative Care Into Ambulatory Care of Noncancer Serious Chronic Illness: Mixed Methods Review and Meta-Analysis.

PURPOSE: To perform a mixed methods review to evaluate the effectiveness and implementation of models for integrating palliative care into ambulatory care for US adults with noncancer serious chronic illness. METHODS: We searched 3 electronic databases from January 2000 to May 2020 and included qualitative, mixed methods studies and randomized and nonrandomized controlled trials. For each study, 2 reviewers abstracted data and independently assessed for quality. We conducted meta-analyses as appropriate and graded strength of evidence (SOE) for quantitative outcomes. RESULTS: Quantitative analysis included 14 studies of 2,934 patients. Compared to usual care, models evaluated were not more effective for improving patient health-related quality of life (HRQOL) (standardized mean difference [SMD] of 4 of 8 studies, 0.19; 95% CI, ‒0.03 to 0.41) (SOE: moderate) or for patient depressive symptom scores (SMD of 3 of 9 studies, ‒0.09; 95% CI, ‒0.35 to 0.16) (SOE: moderate). Models might have little to no effect on patient satisfaction (SOE: low) but were more effective for increasing advance directive (AD) documentation (relative risk, 1.62; 95% CI, 1.35 to 1.94) (SOE: moderate). Qualitative analysis included 5 studies of 146 patients. Patient preferences for appropriate timing of palliative care varied; costs, additional visits, and travel were considered barriers to implementation. CONCLUSION: Models might have little to no effect on decreasing overall symptom burden and were not more effective than usual care for improving HRQOL or depressive symptom scores but were more effective for increasing AD documentation. Additional research should focus on identifying and addressing characteristics and implementation factors critical to integrating models to improve ambulatory, patient-centered outcomes.

A PRO-cision medicine intervention to personalize cancer care using patient-reported outcomes: intervention development and feasibility-testing.

PURPOSE: PRO-cision medicine refers to personalizing care using patient-reported outcomes (PROs). We developed and feasibility-tested a PRO-cision Medicine remote PRO monitoring intervention designed to identify symptoms and reduce the frequency of routine in-person visits. METHODS: We conducted focus groups and one-on-one interviews with metastatic breast (n = 15) and prostate (n = 15) cancer patients and clinicians (n = 10) to elicit their perspectives on a PRO-cision Medicine intervention's design, value, and concerns. We then feasibility-tested the intervention in 24 patients with metastatic breast cancer over 6-months. We obtained feedback via end-of-study surveys (patients) and interviews (clinicians). RESULTS: Focus group and interview participants reported that remote PRO symptom reporting could alert clinicians to issues and avoid unneeded/unwanted visits. However, some patients did not perceive avoiding visits as beneficial. Clinicians were concerned about workflow. In the feasibility-test, 24/236 screened patients (10%) enrolled. Many patients were already being seen less frequently than monthly (n = 97) or clinicians did not feel comfortable seeing them less frequently than monthly (n = 31). Over the 6-month study, there were 75 total alerts from 392 PRO symptom assessments (average 0.19 alert/assessment). Patients had an average of 4 in-person visits (vs. expected 6.5 without the intervention). Patients (n = 19/24) reported high support on the end-of-study survey, with more than 80% agreeing with positive statements about the intervention. Clinician end-of-study interviews (n = 11/14) suggested that PRO symptom monitoring be added to clinic visits, rather than replacing them, and noted the increasing role of telemedicine. CONCLUSIONS: Future research should explore combining remote PRO symptom monitoring with telemedicine and in-person visits.

Pain Experiences of Adults With Sickle Cell Disease and Hematopoietic Stem Cell Transplantation: A Qualitative Study.

OBJECTIVE: Despite increasing use of hematopoietic stem cell transplantation (HSCT) for adults with sickle cell disease (SCD), little is known about pain management experiences throughout this process. The objective of this study was to explore patients' experiences with pain and pain management during and after HSCT for SCD. METHODS: We conducted a qualitative interview study with 10 patients who underwent HSCT for SCD. We transcribed interviews verbatim and inductively identified codes. We used thematic analysis alongside a constant comparative method to develop and refine a codebook that aided in the identification of themes. RESULTS: Four key themes emerged. (1) The pain trajectory: patients described a fluctuating course of pain during HSCT, which often extended long afterwards and impacted all aspects of life, particularly affected by pre-HSCT experiences; (2) The role of opioids-a double-edged sword: patients described opioids as reducing pain but insufficiently to balance significant adverse effects and burden; (3) Patient-centered decision making in pain management: patients described insufficient agency in decisions about opioid use and weaning; and (4) Consequences of health-related stigma: patients described experiences with stigma, mainly related to opioid use and weaning, as similar to pre-HSCT. CONCLUSIONS: From the perspective of patients who have undergone HSCT for SCD, clinicians should use a patient-centered approach, integrating non-opioid approaches into pain management, particularly psychosocial support. As transplant for SCD becomes increasingly available, incorporating patient perspectives may improve health care delivery and overall patient experiences.

Assessing Early Supportive Care Needs among Son or Daughter Haploidentical Transplantation Donors.

Increasingly, adolescent, young adult, and adult children are relied upon as donors for their parents undergoing blood and marrow stem cell transplant. How family functioning impacts donors' decision making and whether haploidentical donor children have unique supportive care needs is unknown. In this qualitative research study, we conducted 15 semistructured telephone interviews among individuals who underwent blood or marrow stem cell donation for their parent. Interviews explored donors' perspectives of the transplant experience across the trajectory from screening through early post-transplant follow-up and elicited unmet needs. Major themes included: (1) perception of choice, (2) act of giving back, (3) burdens of donation, (4) anticipated health benefit to parent, and (5) impact of donation on parent/child relationship. The majority of participants described high family functioning, but strain was also evident. Family functioning rarely was reported as affecting the decision to donate, with all donors expressing a sense of obligation. Participants were overwhelmingly satisfied with their decision and the ability to give back to their parent. Suggestions for the health care team to improve the donation experience focused on increased education about potential delays in screening, better description of possible complications for recipients, and provision of emotional support following donation.

Identity reconstruction among older cancer survivors: Age and meaning in the context of a life-altering illness.

This article evaluates how older cancer patients describe cancer survivorship and incorporate the cancer experience into long-term evaluations of health. From a series of 53 qualitative interviews with adults with histories of breast and prostate cancers and non-Hodgkin's lymphoma, we analyzed age-related discussions among those 65 and older (n = 21). Emergent themes revealed the: (1) historical conceptualization of cancer, (2) changed perspective following diagnosis, (3) cancer in the context of a long biography, (4) cancer in the context of the aging body and decline, and (5) meaning of time remaining and quality of life. One important suggestion from our work, relevant to all clinicians regardless of specialty or role, is to incorporate goals for the future into individualized survivor care plans for older survivors.

Dynamic Prediction of Post-Acute Care Needs for Hospitalized Medicine Patients.

OBJECTIVES: Use patient demographic and clinical characteristics at admission and time-varying in-hospital measures of patient mobility to predict patient post-acute care (PAC) discharge. DESIGN: Retrospective cohort analysis of electronic medical records. SETTING AND PARTICIPANTS: Patients admitted to the two participating Hospitals from November 2016 through December 2019 with ≥72 hours in a general medicine service. METHODS: Discharge location (PAC vs home) was the primary outcome, and 2 time-varying measures of patient mobility, Activity Measure for Post-Acute Care (AM-PAC) Mobility "6-clicks" and Johns Hopkins Highest Level of Mobility, were the primary predictors. Other predictors included demographic and clinical characteristics. For each day of hospitalization, we predicted discharge to PAC using the demographic and clinical characteristics and most recent mobility data within a random forest (RF) for survival, longitudinal, and multivariate (RF-SLAM) data. A regression tree for the daily predicted probabilities of discharge to PAC was constructed to represent a global summary of the RF. RESULTS: There were 23,090 total patients and compared to PAC, those discharged home were younger (64 vs 71), had shorter length of stay (5 vs 8 days), higher AM-PAC at admission (43 vs 32), and average AM-PAC throughout hospitalization (45 vs 35). AM-PAC was the most important predictor, followed by age, and whether the patient lives alone. The area under the hospital day-specific receiver operating characteristic curve ranged from 0.76 to 0.79 during the first 5 days. The global summary tree explained 75% of the variation in predicted probabilities for PAC from the RF. Sensitivity (75%), specificity (70%), and accuracy (72%) were maximized at a PAC probability threshold of 40%. CONCLUSIONS AND IMPLICATIONS: Daily assessment of patient mobility should be part of routine practice to help inform care planning by hospital teams. Our prediction model could be used as a valuable tool by multidisciplinary teams in the discharge planning process.

Effectiveness of telehealth versus in-person care during the COVID-19 pandemic: a systematic review.

In this systematic review, we compared the effectiveness of telehealth with in-person care during the pandemic using PubMed, CINAHL, PsycINFO, and the Cochrane Central Register of Controlled Trials from March 2020 to April 2023. We included English-language, U.S.-healthcare relevant studies comparing telehealth with in-person care conducted after the onset of the pandemic. Two reviewers independently screened search results, serially extracted data, and independently assessed the risk of bias and strength of evidence. We identified 77 studies, the majority of which (47, 61%) were judged to have a serious or high risk of bias. Differences, if any, in healthcare utilization and clinical outcomes between in-person and telehealth care were generally small and/or not clinically meaningful and varied across the type of outcome and clinical area. For process outcomes, there was a mostly lower rate of missed visits and changes in therapy/medication and higher rates of therapy/medication adherence among patients receiving an initial telehealth visit compared with those receiving in-person care. However, the rates of up-to-date labs/paraclinical assessment were also lower among patients receiving an initial telehealth visit compared with those receiving in-person care. Most studies lacked a standardized approach to assessing outcomes. While we refrain from making an overall conclusion about the performance of telehealth versus in-person visits the use of telehealth is comparable to in-person care across a variety of outcomes and clinical areas. As we transition through the COVID-19 era, models for integrating telehealth with traditional care become increasingly important, and ongoing evaluations of telehealth will be particularly valuable.

The need to expand the infection prevention workforce in home infusion therapy.

Infection prevention and surveillance training approaches for home infusion therapy have not been well defined. We interviewed home infusion staff who perform surveillance activities about barriers to and facilitators for central line-associated bloodstream infection (CLABSI) surveillance and identified barriers to training in CLABSI surveillance. Our findings show a lack of formal surveillance training for staff. This gap can be addressed by adapting existing training resources to the home infusion setting.

Controlling the chaos: Information management in home-infusion central-line-associated bloodstream infection (CLABSI) surveillance.

Objectives: Access to patient information may affect how home-infusion surveillance staff identify central-line-associated bloodstream infections (CLABSIs). We characterized information hazards in home-infusion CLABSI surveillance and identified possible strategies to mitigate information hazards. Design: Qualitative study using semistructured interviews. Setting and participants: The study included 21 clinical staff members involved in CLABSI surveillance at 5 large home-infusion agencies covering 13 states and the District of Columbia. Methods: Interviews were conducted by 1 researcher. Transcripts were coded by 2 researchers; consensus was reached by discussion. Results: Data revealed the following barriers: information overload, information underload, information scatter, information conflict, and erroneous information. Respondents identified 5 strategies to mitigate information chaos: (1) engage information technology in developing reports; (2) develop streamlined processes for acquiring and sharing data among staff; (3) enable staff access to hospital electronic health records; (4) use a single, validated, home-infusion CLABSI surveillance definition; and (5) develop relationships between home-infusion surveillance staff and inpatient healthcare workers. Conclusions: Information chaos occurs in home-infusion CLABSI surveillance and may affect the development of accurate CLABSI rates in home-infusion therapy. Implementing strategies to minimize information chaos will enhance intra- and interteam collaborations in addition to improving patient-related outcomes.

Implementing and validating a home-infusion central-line-associated bloodstream infection surveillance definition.

OBJECTIVE: Central-line-associated bloodstream infection (CLABSI) surveillance in home infusion therapy is necessary to track efforts to reduce infections, but a standardized, validated, and feasible definition is lacking. We tested the validity of a home-infusion CLABSI surveillance definition and the feasibility and acceptability of its implementation. DESIGN: Mixed-methods study including validation of CLABSI cases and semistructured interviews with staff applying these approaches. SETTING: This study was conducted in 5 large home-infusion agencies in a CLABSI prevention collaborative across 14 states and the District of Columbia. PARTICIPANTS: Staff performing home-infusion CLABSI surveillance. METHODS: From May 2021 to May 2022, agencies implemented a home-infusion CLABSI surveillance definition, using 3 approaches to secondary bloodstream infections (BSIs): National Healthcare Safety Program (NHSN) criteria, modified NHSN criteria (only applying the 4 most common NHSN-defined secondary BSIs), and all home-infusion-onset bacteremia (HiOB). Data on all positive blood cultures were sent to an infection preventionist for validation. Surveillance staff underwent semistructured interviews focused on their perceptions of the definition 1 and 3-4 months after implementation. RESULTS: Interrater reliability scores overall ranged from κ = 0.65 for the modified NHSN criteria to κ = 0.68 for the NHSN criteria to κ = 0.72 for the HiOB criteria. For the NHSN criteria, the agency-determined rate was 0.21 per 1,000 central-line (CL) days, and the validator-determined rate was 0.20 per 1,000 CL days. Overall, implementing a standardized definition was thought to be a positive change that would be generalizable and feasible though time-consuming and labor intensive. CONCLUSIONS: The home-infusion CLABSI surveillance definition was valid and feasible to implement.

The role of spiritual experiences and activities in the relationship between chronic illness and psychological well-being.

Our research explores the correlates of spiritual experiences over a 2-year period in a sample of older adults (N = 164; mean age 81.9 years) living in a continuing care retirement community. Utilizing responses to the Daily Spiritual Experiences Scale, scores were analyzed for changes over time and for their hypothesized moderating effect in the relationship between chronic illness impact and markers of psychological well-being (as measured by the Geriatric Depression and Life Satisfaction scales). Repeated measures ANOVA indicated a significant decline (P < .01) in the reported spiritual experiences over a 2-year period of time, and t tests showed a significant difference by gender (P < .01) in years 1 and 2, with women reporting higher levels of spiritual experiences than men. Analyses found low spirituality scores associated with low life satisfaction in all years (baseline: r = -.288, P < .01; year 1: r = -.209, P < .05; year 2: r = -.330, P < .001). Only weak associations were detected between low spirituality and the presence of depressive symptoms at baseline (r = .186, P < .05) and year 2 (r = .254, P < .01). Moderation effects of spirituality on the relationship between chronic illness impact and markers of psychological well-being were explored in all years, with a statistically significant effect found only for the presence of depressive symptoms in year 2. Higher impact of chronic illnesses is associated with more depressive symptoms under conditions of low spirituality. Future research may center upon longer-duration evaluation of reliance upon spiritual practices and their impact in care management models.

Understanding Hazards for Adverse Drug Events Among Older Adults After Hospital Discharge: Insights From Frontline Care Professionals.

OBJECTIVES: Care transitions pose a high risk of adverse drug events (ADEs). We aimed to identify hazards to medication safety for older adults during care transitions using a systems approach. METHODS: Hospital-based professionals from 4 hospitals were interviewed about ADE risks after hospital discharge among older adults. Concerns were extracted from the interview transcript, and for each concern, hazard for medication-related harms was coded and grouped by its sources according to a human factors and systems engineering model that views postdischarge ADEs as the outcome of professional and patient home work systems. RESULTS: Thirty-eight professionals participated (5 hospitalists, 24 nurses, 4 clinical pharmacists, 3 pharmacy technicians, and 2 social workers). Hazards were classified into 6 groups, ranked by frequencies of hazards coded: (1) medication tasks related at home, (2) patient and caregiver related, (3) hospital work system related, (4) home resource related, (5) hospital professional-patient collaborative work related, and (6) external environment related. Medications most frequently cited when describing concerns included anticoagulants, insulins, and diuretics. Top coded hazard types were complex dosing, patient and caregiver knowledge gaps in medication management, errors in discharge medications, unaffordable cost, inadequate understanding about changes in medications, and gaps in access to care or in sharing medication information. CONCLUSIONS: From the perspective of hospital-based frontline health care professionals, hazards for medication-related harms during care transitions were multifactorial and represented those introduced by the hospital work system as well as defects unrecognized and unaddressed in the home work system.

A task analysis of central line-associated bloodstream infection (CLABSI) surveillance in home infusion therapy.

BACKGROUND: Barriers for home infusion therapy central line associated bloodstream infection (CLABSI) surveillance have not been elucidated and are needed to identify how to support home infusion CLABSI surveillance. We aimed to (1) perform a goal-directed task analysis of home infusion CLABSI surveillance, and (2) describe barriers to, facilitators for, and suggested strategies for successful home infusion CLABSI surveillance. METHODS: We conducted semi-structured interviews with team members involved in CLABSI surveillance at 5 large home infusion agencies to explore work systems used by members of the agency for home infusion CLABSI surveillance. We analyzed the transcribed interviews qualitatively for themes. RESULTS: Twenty-one interviews revealed 8 steps for performing CLABSI surveillance in home infusion therapy. Major barriers identified included the need for training of the surveillance staff, lack of a standardized definition, inadequate information technology support, struggles communicating with hospitals, inadequate time, and insufficient clinician engagement and leadership support. DISCUSSION: Staff performing home infusion CLABSI surveillance need health system resources, particularly leadership and front-line engagement, access to data, information technology support, training, dedicated time, and reports to perform tasks. CONCLUSIONS: Building home infusion CLABSI surveillance programs will require support from home infusion leadership.

Challenges and Strategies for Patient Safety in Primary Care: A Qualitative Study.

Although most health care occurs in the ambulatory setting, limited research examines how providers and patients think about and enact ambulatory patient safety. This multimethod qualitative study seeks to identify perceived challenges and strategies to improve ambulatory safety from the perspectives of clinicians, staff, and patients. Data included interviews (N = 101), focus groups (N = 65), and observations of safety processes (N = 79) collected from 10 patient-centered medical homes. Key safety issues included the lack of interoperability among health information systems, clinician-patient communication failures, and challenges with medication reconciliation. Commonly cited safety strategies leveraged health information systems or involved dedicated resources (eg, providing access to social workers). Patients also identified strategies not mentioned by clinicians, emphasizing the need for their involvement in developing safety solutions. This work provides insight into safety issues of greatest concern to clinicians, staff, and patients and strategies to improve safety in the ambulatory setting.

Patient perceptions of safety in primary care: a qualitative study to inform care.

Patients' perspectives on patient safety have rarely been incorporated into quality initiatives in primary care. Our objective was to understand the patient perspective on patient safety in patient-centered medical homes (PCMHs). We conducted 12 patient focus groups/interviews in nine sites with 65 patients at a geographically diverse sample of National Committee on Quality Assurance Level 3 recognized PCMHs across three states. Using a patient safety framework, we coded and analyzed interviews for overarching themes and subthemes across patient safety domains. Overarching themes focused on (1) both clear and timely communication with and between clinicians and (2) trust in the care team, including being heard, respected, and treated as a whole person. Other themes important to specific patient safety domains included sharing of and access to information, patient education and patient-centered medication reconciliation process, clear documentation for the diagnostic process, patient-centered comprehensive visits, and timeliness of care. Communication and trust are key to patient perceptions of safe primary care. Focusing on these themes across safety domains may help to make primary care both more patient-centered and safer, and should be considered in future ambulatory safety initiatives.

Advance Care Planning Shared Decision-Making Tools for Non-Cancer Chronic Serious Illness: A Mixed Method Systematic Review.

CONTEXT: Shared decision-making tools can facilitate advance care planning and goals of care conversations in non-cancer serious illness. More information on integrating these tools in ambulatory care could better support clinicians and patients/caregivers in these conversations. OBJECTIVES: We evaluated effectiveness and implementation of integrating palliative care shared decision-making tools into ambulatory care for U.S. adults with serious, life-threatening illness and their caregivers. DATA SOURCES: We searched PubMed, CINAHL, and the Cochrane Central Register of Controlled Trials (2000 - May 2020) for quantitative controlled, qualitative, and mixed-methods studies. REVIEW METHODS: Two reviewers screened articles, abstracted data, and independently assessed risk of bias or study quality. For quantitative trials, we graded strength of evidence for key outcomes: patient/caregiver satisfaction, depression or anxiety, concordance between patient preferences for care and care received, and healthcare utilization, including advance directive documentation. RESULTS: We included 6 quantitative effectiveness randomized, controlled trials and 5 qualitative implementation studies across primary care and specialty populations. Shared decision-making tools all addressed goals-of-care communication or advance care planning. Palliative care shared decision-making tools may be effective for improving patient satisfaction with communication and advance directive documentation. We were unable to draw conclusions about concordance between preferences and care received. Patients and caregivers preferred advance care planning discussions grounded in patient and caregiver experiences with individualized timing. CONCLUSIONS: For non-cancer serious illness, advance care planning shared decision-making tools may improve several outcomes. Future trials should evaluate concordance with care received and other health care utilization. KEY MESSAGE: This mixed-methods review concludes that when integrating palliative care into ambulatory care for serious illness and conditions other than cancer, advance care planning shared decision-making tools may improve patient satisfaction and advance directive documentation.

Perceptions of Facilitators and Barriers to Measuring and Improving Quality in Palliative Care Programs.

OBJECTIVE: To examine perceptions of facilitators and barriers to quality measurement and improvement in palliative care programs and differences by professional and leadership roles. METHODS: We surveyed team members in diverse US and Canadian palliative care programs using a validated survey addressing teamwork and communication and constructs for educational support and training, leadership, infrastructure, and prioritization for quality measurement and improvement. We defined key facilitators as constructs rated ≥4 (agree) and key barriers as those ≤3 (disagree) on 1 to 5 scales. We conducted multivariable linear regressions for associations between key facilitators and barriers and (1) professional and (2) leadership roles, controlling for key program and respondent factors and clustering by program. RESULTS: We surveyed 103 respondents in 11 programs; 45.6% were physicians and 50% had leadership roles. Key facilitators across sites included teamwork, communication, the implementation climate (or environment), and program focus on quality improvement. Key barriers included educational support and incentives, particularly for quality measurement, and quality improvement infrastructure such as strategies, systems, and skilled staff. In multivariable analyses, perceptions did not differ by leadership role, but physicians and nurse practitioners/nurses/physician assistants rated most constructs statistically significantly more negatively than other team members, especially for quality improvement (6 of the 7 key constructs). CONCLUSIONS: Although participants rated quality improvement focus and environment highly, key barriers included lack of infrastructure, especially for quality measurement. Building on these facilitators and measuring and addressing these barriers might help programs enhance palliative care quality initiatives' acceptability, particularly for physicians and nurses.

Patient Safety in Primary Care: Conceptual Meanings to the Health Care Team and Patients.

INTRODUCTION: Patient safety in primary care is an emerging priority, and experts have highlighted medications, diagnoses, transitions, referrals, and testing as key safety domains. This study aimed to (1) describe how frontline clinicians, administrators, and staff conceptualize patient safety in primary care; and (2) compare and contrast these conceptual meanings from the patient's perspective. METHODS: We conducted interviews with 101 frontline clinicians, administrators and staff, and focus groups with 65 adult patients at 10 patient-centered medical homes. We used thematic analysis to approach coding. RESULTS: Findings indicate that frontline personnel conceptualized patient safety more in terms of work functions, which reflect the grouping of tasks or responsibilities to guide how care is being delivered. Frontline personnel and patients conceptualized patient safety in largely consistent ways. DISCUSSION: Function-based conceptualizations of patient safety in primary care may better reflect frontline personnel and patients' experiences than domain-based conceptualizations, which are favored by experts.

Proposed Criteria for Systematic Evaluation of Qualitative Oncology Research.

Oncology has made significant advances in standardizing how clinical research is conducted and reported. The advancement of such research that improves oncology practice requires an expansion of not only our research questions but also the research methods we deploy to address them. In particular, there is increasing recognition of the value of qualitative research methods to develop more comprehensive understandings of phenomena of interest and to describe and explain underlying motivations and potential causes of specific outcomes. However, qualitative researchers in oncology have lacked guidance to produce and evaluate methodologically rigorous qualitative publications. In this review, we highlight characteristics of high-quality, methodologically rigorous reports of qualitative research, provide criteria for readers and reviewers to appraise such publications critically, and proffer guidance for preparing publications for submission to Journal of Oncology Practice. Namely, the quality of qualitative research in oncology practice is best assessed according to key domains that include fitness of purpose, theoretical framework, methodological rigor, ethical concerns, analytic comprehensives, and the dissemination/application of findings. In particular, determinations of rigor in qualitative research in oncology practice should consider definitions of the appropriateness of qualitative methods for the research objectives against the setting of current literature, use of an appropriate theoretical framework, inclusion of a rigorous and innovative measurement plan, application of appropriate analytic techniques, and clear explanation and dissemination of the research findings.

Preparing Older Patients With Serious Illness for Advance Care Planning Discussions in Primary Care.

CONTEXT: Little is known about how to prepare older patients for advance care planning (ACP) discussions in primary care. OBJECTIVES: The objective of the study was to explore older patients' perspectives and experiences on ACP discussions with family members and/or primary care clinicians. METHODS: 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. RESULTS: 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. CONCLUSION: 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.