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Older Adult and Surrogate Perspectives on Serious, Difficult, and Important Medical Decisions.

ABSTRACT: OBJECTIVES:To elicit decisions that diverse older adults and surrogates perceive as serious, difficult, or important and explore what helped them make those decisions. DESIGN:Focus groups (N=13) in which participants were asked to recall serious, difficult, or important medical decisions and what helped them make those decisions. SETTING:Clinics, support groups and senior centers. PARTICIPANTS:Diverse English- and Spanish-speaking older adults (age: mean 78, range 64-89) and surrogates (age: mean 57, range 33-76) (29% African American, 26% white, 26% Asian or Pacific Islander, 19% Hispanic) (N=69). MEASUREMENTS:We used thematic analysis to analyze transcripts. RESULTS:We identified 168 decisions. Older adults from all racial and ethnic groups frequently recalled cancer treatment decisions and decisions about chronic illness management. Surrogates described decisions about transitions in care and medical crises. Older adults valued self-sufficiency and maximizing survival and relied on personal experiences as often as medical advice. In all racial and ethnic groups, surrogates valued avoiding suffering for loved ones. CONCLUSION:Diverse older adults and surrogates perceive life-threatening illness and day-to-day decisions about chronic disease to be serious, difficult, and important. The surrogates' goal of avoiding suffering of older adults may differ from older adults' priorities of self-sufficiency and maximizing survival. Clinicians should support older adults and surrogates in identifying important and difficult decisions and learn about the values and information sources they bring to decision-making. With this knowledge, clinicians can customize decision support and achieve person-centered care.

SUBMITTER: Petrillo LA

PROVIDER: S-EPMC6167167 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature

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Older Adult and Surrogate Perspectives on Serious, Difficult, and Important Medical Decisions.

Petrillo Laura A LA McMahan Ryan D RD Tang Victoria V Dohan Daniel D Sudore Rebecca L RL

Journal of the American Geriatrics Society 20180704 8

<h4>Objectives</h4>To elicit decisions that diverse older adults and surrogates perceive as serious, difficult, or important and explore what helped them make those decisions.<h4>Design</h4>Focus groups (N=13) in which participants were asked to recall serious, difficult, or important medical decisions and what helped them make those decisions.<h4>Setting</h4>Clinics, support groups and senior centers.<h4>Participants</h4>Diverse English- and Spanish-speaking older adults (age: mean 78, range 64 ...[more]

PMID: 29972594

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Project description:Importance:An important aspect of high-quality care is ensuring that treatments are in alignment with patient or surrogate decision-maker goals. Treatment discordant with patient goals has been shown to increase medical costs and prolong end-of-life difficulties. Objectives:To evaluate discordance between surrogate decision-maker goals of care and medical orders and treatments provided to hospitalized, incapacitated older patients. Design, Setting, and Participants:This prospective cohort study included 363 patient-surrogate dyads. Patients were 65 years or older and faced at least 1 major medical decision in the medical and medical intensive care unit services in 3 tertiary care hospitals in an urban Midwestern area. Data were collected from April 27, 2012, through July 10, 2015, and analyzed from October 5, 2018, to December 5, 2019. Main Outcomes and Measures:Each surrogate's preferred goal of care was determined via interview during initial hospitalization and 6 to 8 weeks after discharge. Surrogates were asked to select the goal of care for the patient from 3 options: comfort-focused care, life-sustaining treatment, or an intermediate option. To assess discordance, the preferred goal of care as determined by the surrogate was compared with data from medical record review outlining the medical treatment received during the target hospitalization. Results:A total of 363 dyads consisting of patients (223 women [61.4%]; mean [SD] age, 81.8 [8.3] years) and their surrogates (257 women [70.8%]; mean [SD] age, 58.3 [11.2] years) were included in the analysis. One hundred sixty-nine patients (46.6%) received at least 1 medical treatment discordant from their surrogate's identified goals of care. The most common type of discordance involved full-code orders for patients with a goal of comfort (n?=?41) or an intermediate option (n?=?93). More frequent in-person contact between surrogate and patient (adjusted odds ratio [AOR], 0.43; 95% CI, 0.23-0.82), patient residence in an institution (AOR, 0.44; 95% CI, 0.23-0.82), and surrogate-rated quality of communication (AOR, 0.98; 95% CI, 0.96-0.99) were associated with lower discordance. Surrogate marital status (AOR for single vs married, 1.92; 95% CI, 1.01-3.66), number of family members involved in decisions (AOR for ?2 vs 0-1, 1.84; 95% CI, 1.05-3.21), and religious affiliation (AOR for none vs any, 4.87; 95% CI, 1.12-21.09) were associated with higher discordance. Conclusions and Relevance:This study found that discordance between surrogate goals of care and medical treatments for hospitalized, incapacitated patients was common. Communication quality is a modifiable factor associated with discordance that may be an avenue for future interventions.

Project description:Background. Older adults receiving home care services often face decisions related to aging, illness, and loss of autonomy. To inform tailored shared decision making interventions, we assessed their decisional needs by asking about the most common difficult decisions, measured associated decisional conflict, and identified factors associated with it. Methods. In March 2020, we conducted a cross-sectional survey with a pan-Canadian Web-based panel of older adults (≥65 y) receiving home care services. For a difficult decision they had faced in the past year, we evaluated clinically significant decisional conflict (CSDC) using the 16-item Decisional Conflict Scale (score 0-100) with a >37.5 cutoff. To identify factors associated with CSDC, we performed descriptive, bivariable, and multivariable analyses using the stepwise selection method with an assumed entry and exit significance level of 0.15 and 0.20, respectively. Final model selection was based on the Bayesian information criterion. Results. Among 460 participants with an average age of 72.5 y, difficult decisions were, in order of frequency, about housing and safety (57.2%), managing health conditions (21.8%), and end-of-life care (8.3%). CSDC was experienced by 14.6% (95% confidence interval [CI]: 11.5%, 18.1%) of respondents on all decision points. Factors associated with CSDC included household size = 1 (OR [95% CI]: 1.81 [0.99, 3.33]; P = 0.27), household size = 3 (2.66 [0.78, 8.98]; P = 0.83), and household size = 4 (6.91 [2.23, 21.39]; P = 0.014); preferred option not matching the decision made (4.05 [2.05, 7.97]; P < 0.001); passive role in decision making (5.13 [1.78, 14.77]; P = 0.002); and lower quality of life (0.70 [0.57, 0.87]; P<0.001). Discussion. Some older adults receiving home care services in Canada experience CSDC when facing difficult decisions. Shared decision-making interventions could mitigate associated factors.HighlightsThis is the first study in Canada to assess the decisional needs of older adults receiving care at home and to identify their most common difficult decisions.Difficult decisions most frequently made were about housing and safety. The most significant decisional conflict was experienced by people making decisions about palliative care.When their quality-of-life score was low, older adults experienced clinically significant decision conflict.

Project description:ImportancePatients increasingly demand transparency in and control of how their medical records and biospecimens are shared for research. How much they are willing to share and what factors influence their sharing preferences remain understudied in real settings.ObjectivesTo examine whether and how various presentations of consent forms are associated with differences in electronic health record and biospecimen sharing rates and whether these rates vary according to user interface design, data recipients, data and biospecimen items, and patient characteristics.Design, setting, and participantsFor this survey study, a data and biospecimen sharing preference survey was conducted at 2 academic hospitals from May 1, 2017, to September 31, 2018, after simple randomization of patients to 1 of 4 options with different layout and formats of indicating sharing preferences: opt-in simple, opt-in detailed, opt-out simple, and opt-out detailed.InterventionsAll participants were presented with a list of data and biospecimen items that could be shared for research within the same health care organization or with other nonprofit or for-profit institutions. Participating patients were randomly asked to select the items that they would share (opt-in) or were asked to select items they would not share (opt-out). Patients in these 2 groups were further randomized to select only among 18 categories vs 59 detailed items (simple vs detailed form layout).Main outcomes and measuresThe primary end points were the percentages of patients willing to share data and biospecimen categories or items.ResultsAmong 1800 eligible participants, 1246 (69.2%) who completed their data sharing survey were included in the analysis, and 850 of these patients (mean [SD] age, 51.1 [16.7] years; 507 [59.6%] female; 677 [79.6%] white) responded to the satisfaction survey. A total of 46 participants (3.7%) declined sharing with the home institution, 352 (28.3%) with nonprofit institutions, and 590 (47.4%) with for-profit institutions. A total of 836 (67.1%) indicated that they would share all items with researchers from the home institution. When comparing opt-out with opt-in interfaces, all 59 sharing choice variables (100%) were associated with the sharing decision. When comparing simple with detailed forms, only 14 variables (23.7%) were associated with the sharing decision.Conclusions and relevanceThe findings suggest that most patients are willing to share their data and biospecimens for research. Allowing patients to decide with whom they want to share certain types of data may affect research that involves secondary use of electronic health records and/or biosamples for research.

Project description:Quantitative research methods are essential to the development of professional competence in psychology. They are also an area of weakness for many students. In particular, students are known to struggle with the skill of selecting quantitative analytical strategies appropriate for common research questions, hypotheses and data types. To begin understanding this apparent deficit, we presented nine psychology undergraduates (who had all completed at least one quantitative methods course) with brief research vignettes, and asked them to explicate the process they would follow to identify an appropriate statistical technique for each. Thematic analysis revealed that all participants found this task challenging, and even those who had completed several research methods courses struggled to articulate how they would approach the vignettes on more than a very superficial and intuitive level. While some students recognized that there is a systematic decision making process that can be followed, none could describe it clearly or completely. We then presented the same vignettes to 10 psychology academics with particular expertise in conducting research and/or research methods instruction. Predictably, these "experts" were able to describe a far more systematic, comprehensive, flexible, and nuanced approach to statistical decision making, which begins early in the research process, and pays consideration to multiple contextual factors. They were sensitive to the challenges that students experience when making statistical decisions, which they attributed partially to how research methods and statistics are commonly taught. This sensitivity was reflected in their pedagogic practices. When asked to consider the format and features of an aid that could facilitate the statistical decision making process, both groups expressed a preference for an accessible, comprehensive and reputable resource that follows a basic decision tree logic. For the academics in particular, this aid should function as a teaching tool, which engages the user with each choice-point in the decision making process, rather than simply providing an "answer." Based on these findings, we offer suggestions for tools and strategies that could be deployed in the research methods classroom to facilitate and strengthen students' statistical decision making abilities.

Project description:ImportanceNational efforts to improve safe opioid prescribing focus on preventing misuse, overdose, and opioid use disorder. This approach overlooks opportunities to better prevent other serious opioid-related harms in complex populations, such as older adult survivors of cancer. Little is known about the rates and risk factors for comprehensive opioid-related harms in this population.ObjectiveTo determine rates of multiple opioid-related adverse drug events among older adults who survived breast cancer and estimate the risk of these events associated with opioid use in the year after completing cancer treatment.Design, setting, and participantsThis retrospective cohort study used 2007 to 2016 Surveillance, Epidemiology and End Results-Medicare data from fee-for-service Medicare beneficiaries with first cancer diagnosis of stage 0 to III breast cancer at age 66 to 90 years from January 1, 2008, through December 31, 2015, who completed active breast cancer treatment. Data were analyzed from October 31, 2019, to June 10, 2020.ExposuresRepeated daily measure indicating possession of any prescription opioid supply in Medicare Part D prescription claims.Main outcomes and measuresAdjusted risk ratios (aRRs), estimated using modified Poisson generalized estimating equation models, for adverse drug events related to substance misuse (ie, diagnosed opioid abuse, dependence, or poisoning), other adverse drug events associated with opioid use (ie, gastrointestinal events, infections, falls and fractures, or cardiovascular events), and all-cause hospitalization associated with opioid supply the prior day, controlling for patient characteristics.ResultsAmong 38 310 women included in the study (mean [SD] age, 74.3 [6.3] years), there were 0.010 (95% CI, 0.008-0.011) adverse drug events related to substance misuse per 1000 person-days, 0.237 (95% CI, 0.229-0.245) other adverse drug events associated with opioid use per 1000 person-days, and 0.675 (95% CI, 0.662-0.689) all-cause hospitalizations per 1000 person-days. Opioid use was associated with increased risk of adverse drug events related to substance misuse (aRR, 14.62; 95% CI, 9.69-22.05; P < .001), other adverse drug events related to opioid use (aRR, 2.50; 95% CI, 2.11-2.96; P < .001), and all-cause hospitalization (aRR, 2.77; 95% CI, 2.55-3.02; P < .001). In a dose-response effect, individuals with high daily opioid doses had consistently higher risks of all study outcomes compared with individuals who had low opioid doses. Compared with days with no opioid exposure, the risk of any adverse drug event related to substance misuse was 3.4-fold higher for individuals with a current opioid supply ≥50 mg morphine equivalent dose per day (aRR, 3.40; 95% CI, 2.47-4.68; P < .001), while the risk was 2.3-fold higher for individuals with 1 to 49 mg morphine equivalent dose per day (aRR, 2.29; 95% CI, 1.89-2.77; P < .001).Conclusions and relevanceThese findings suggest that among older adults who survived breast cancer, continued prescription opioid use in the year after completing active cancer treatment was associated with an immediate increased risk of a broad range of serious adverse drug events related to substance misuse and other adverse drug events associated with opioid use. Clinicians should consider the comprehensive risks of managing cancer pain with long-term opioid therapy.

Project description:ObjectiveAdvance care planning (ACP) assists people to identify their goals, values and treatment preferences for future care. Ideally, preferences are documented in an advance care directive (ACD) and used by doctors to guide medical decision-making should the patient subsequently lose their decision-making capacity. However, studies demonstrate that ACDs are not always adhered to by doctors in clinical practice. We aim to describe the attitudes and perspectives of doctors regarding ACD adherence and the utility of ACDs in clinical practice.DesignFace-to-face semistructured interviews were conducted using three case-based vignettes to explore doctors' decision-making and attitudes towards ACDs. Transcripts were analysed using a thematic analysis.SettingDoctors from a variety of medical specialties and with varying experience levels were recruited from a large tertiary hospital in Melbourne, Australia.ParticipantsA total of 21 doctors were interviewed, 48% female (10/21). Most (19/21) reported having experience using ACDs.ResultsFour themes were identified: aligning with patient preferences (avoiding unwanted care, prioritising autonomy and anticipating family opposition), advocating best interests (defining futile care, relying on clinical judgement, rejecting unreasonable decisions and disregarding legal consequences), establishing validity (doubting rigour of the decision-making process, questioning patients' ability to understand treatment decisions, distrusting outdated preferences and seeking confirmation) and translating written preferences into practice (contextualising patient preferences, applying subjective terminology and prioritising emergency medical treatment).ConclusionsACDs provide doctors with opportunities to align patient preferences with treatment and uphold patient autonomy. However, doctors experience decisional conflict when attempting to adhere to ACDs in practice, especially when they believe that adhering to the ACD is not in the patients' best interests, or if they doubt the validity of the ACD. Future ACP programmes should consider approaches to improve the validity and applicability of ACDs. In addition, there is a need for ethical and legal education to support doctors' knowledge and confidence in ACP and enacting ACDs.

Project description:BackgroundWithin a diagnostic medical imaging context, an interaction encompasses communication, physical contact and emotional support. These intricacies are an integral part in achieving a successful medical imaging outcome. An increasing ageing population presents unique challenges and leads to a higher demand for medical imaging services. There is a paucity of literature exploring the specialised knowledge and skills required by radiographers to service optimal person-centred care for elderly patients. The purpose of the study was to explore radiographers' perspectives on interactional processes during older persons diagnostic medical imaging encounters.MethodsThe study used a qualitative exploratory research design with a descriptive approach to gain insights from 12 purposively sampled Australian radiographers, through open-ended interviews conducted online or by telephone. Verbatim transcripts were produced, and a thematic analysis employed until data saturation had been reached.ResultsThe three themes that emerged from the data analysis were: (1) optimising care and communication, (2) expectations and preconceptions and (3) physical and emotional comfort and safety. Generally, the approach to undertaking older persons examinations entailed more adaptive and flexible competencies and skills in comparison to the familiarised routine diagnostic medical imaging encounters with the younger cohort. Radiographers shared aspects on striking a balance between efficiency and proficiency with the elderly patient needs, preferences, values, safety and well-being considerations. This required swift, complex decision-making and judgement calls due to the unpredictable nature of the context in which the elderly person was situated. The result was the adaptation of examination protocols through equipment manipulation, with minimal disruptions to emotional and physical comfort, achieved through interventions and support strategies.ConclusionThe results highlight the many considerations for radiographers during a short clinical interaction. There is optimism in adding value to the elderly persons experience through a complex interactional process. It is anticipated that the identified skills will inform on best practice principles to achieve an elderly person-centred care medical imaging outcome.

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Older Adult and Surrogate Perspectives on Serious, Difficult, and Important Medical Decisions.

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Older Adult and Surrogate Perspectives on Serious, Difficult, and Important Medical Decisions.

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