Kristin R. Baughman

Managing in the Trenches of Consumer Care: The Challenges of Understanding and Initiating the Advance Care Planning Process

To better understand how community-based long-term care providers define advance care planning and their role in the process, we conducted 8 focus groups with 62 care managers (social workers and registered nurses) providing care for Ohios Medicaid waiver program. Care managers shared that most consumers had little understanding of advance care planning. The care managers defined it broadly, including legal documentation, social aspects, medical considerations, ongoing communication, and consumer education. Care managers saw their roles as information providers, healthcare team members, and educators/coaches. Better education, resources, and coordination are needed to ensure that consumer preferences are realized.

Associations between Difficulty Paying Medical Bills and Forgone Medical and Prescription Drug Care

Problems paying medical bills have been reported to be associated with increased stress, bankruptcy, and forgone medical care. Using the Behavioral Model for Vulnerable Populations developed by Gelberg et al as a framework, as well as data from the 2010 Ohio Family Health Survey, this study examined the relationships between difficulty paying medical bills and forgone medical and prescription drug care. Logistic regression was used to examine associations between difficulty paying medical bills and predisposing, enabling, need (health status), and health behaviors (forgoing medical care). Difficulty paying medical bills increased the effect of lack of health insurance in predicting forgone medical care and had a conditional effect on the association between education and forgone prescription drug care. Those who had less than a bachelors degree were more likely to forgo prescription drug care than those with a bachelors degree, but only if they had difficulty paying medical bills. Difficulty paying medical bills also accounted for the relationships between several population characteristics (eg, age, income, home ownership, health status) in predicting forgone medical and prescription drug care. Policies to cap out-of-pocket medical expenses may mitigate health disparities by addressing the impact of difficulty paying medical bills on forgone care.

Narrative analysis of the ethics in providing advance care planning

Our objective was to better understand the values and ethical dilemmas surrounding advance care planning through stories told by registered nurses and licensed social workers, who were employed as care managers within Area Agencies on Aging. We conducted eight focus groups in which care managers were invited to tell their stories and answer open-ended questions focusing on their interactions with consumers receiving home-based long-term care. Using narrative analysis to understand how our participants thought through particular experiences and what they valued, we identified seven themes representative of their work with consumers and families: humility, respect, responsibilities, boundaries, empowerment, courage, and veracity.

Disease Burden Among Individuals with Severe Mental Illness in a Community Setting

This study examines the prevalence of comorbid physical health conditions within a community sample of individuals with severe mental illness (SMI), compares them to a matched national sample without SMI, and identifies which comorbidities create the greatest disease burden for those with SMI. Self-reported health status, co-morbid medical conditions and perceived disease burden were collected from 203 adults with SMI. Prevalence of chronic health conditions was compared to a propensity-matched sample without SMI from the National Comorbidity Survey-Replication (NCS-R). Compared to NCS-R sample without SMI, our sample with SMI had a higher prevalence of seven out of nine categories of chronic health conditions. Chronic pain and headaches, as well as the number of chronic conditions, were associated with increased disease burden for individuals with SMI. Further investigation of possible interventions, including effective pain management, is needed to improve the health status of this population.

Editorial: Advancing the advance care planning process

How many of us have heard an older person say, ‘I never thought I’d end up like this?’ Or have you listened to older persons with chronic diseases lament they are tired of living with unrelieved pain, under or over-treated physical problems, or overlooked psychological or social problems? Maybe you have heard both older persons and their loved ones voice feeling overwhelmed, confused or disempowered about treatments and their options? Perhaps in these circumstances, you have thought ‘I would not want to live like that?’ The purpose of this editorial is to revisit advance care planning (ACP) and inspect our own actions and beliefs about ACP in order to identify as individuals and care providers how we can advance ACP in the lives of older persons. Advance care planning is often narrowly defined in terms of end of life care or advance directives. The terms are not synonymous and while often used interchangeably, the slippery slope of terminology has led to many misconceptions. Though ACP was chosen purposefully in the early 1990s to imply a process (Curd, 1999) many older persons and their loved ones, as well as many health practitioners, continue to associate ACP solely with completing legal documents. Advanced directives are most often completed when death is imminent, a crisis occurs in a chronic illness trajectory or on admission to a hospice programme. There is, however, much variation globally. The USA is commonly cited for its early legislation. Since 1991, all adults on admission to hospitals are asked if they have made their wishes known about advance directives to be in compliance with the Patient Self-Determination Act (U.S.P.L. 101–508). In other countries across the world, laws vary. Vezzoni (2005) surveyed 70 countries regarding advance directives legislation and grouped the findings into three country categories: those where there was unambiguous support, those that had informed consent but the laws on advance directives were more ambiguous, and the last contained one country that did not recognise informed consent. Legal documents in the form of advance directives are considered the cornerstone of ACP and informed consent is the basis for ACP, but ACP as a process is much more dynamic. ACP includes education about prognosis and common clinical and functional disease trajectories and associated treatment plans. Patients and their loved ones help shape plans of care based on their values and beliefs as their health changes due to the dynamic nature of chronic diseases (Davison, 2008). However, legal documents may be a logical starting point for starting the process of ACP (Sudore et al., 2008). But laws are changing as noted by Jeong et al. (2010) and ACP is evolving to reflect its fluid nature. In the USA, for example, Oregon developed a protocol for persons with serious chronic diseases called the Physician Orders for LifeSustaining Treatment (POLST). The protocol involves a process in which a modifiable portable ACP document is shared across settings and physicians. Sabatino (2010) writes: ‘POLST is not an advance directive; it is an ACP tool that reflects the patient’s here-and-now goals for medical decisions that, considering the patient’s current condition, could confront him or her in the immediate future’ (p. 229). For a complete look at the use of the protocol across States visit the POLST website (http:// www.ohsu.edu/polst/). Advance care planning is perhaps more obvious at the life junctures of older persons noted above, but more recently, attention has been given to ACP in serious chronic conditions like congestive heart failure, dementia (e.g. Alzheimer’s), and chronic obstructive pulmonary disease and with healthy older adults over the age of 85. Other work has been progressing to make ACP normative, that is to make it routine and part of expected health care. An example of this is seen in the ‘Respecting Choices’ ACP programme that was developed in La Crosse, Wisconsin, over 15 years ago so that patients’ choices are assessed and reassessed regularly and those choices are honoured (Hammes et al., 2010). Further work is showing the positive impact of using ACP in settings besides in-patient institutions like home care, primary care and outpatient clinics. Kass-Bartelmes and Hughes (2003) in a written report for The Agency for Healthcare Research and Quality cite numerous studies that show individuals are not involved effectively in ACP and that healthcare professionals themselves are often misinformed about ACP. In several studies dying patients (as well as their families) cited communication as a major problem indicating there were misunderstandings about treatment plans, the disease itself and its trajectory, and the decisions that were needed about care. More recent studies on advance directives show an increase in use (Silveira et al., 2010). However, the issue remains that advance directives are not the whole answer and we must reach older persons sooner in their disease processes. As the number of frail elders continues to increase around the world, fostering ACP is crucial given the emotional and financial costs that come with redundant, avoidable, unwanted or unnecessary, or disputed medical treatments associated with the unfolding of serious chronic illnesses in older persons. As authors we believe that the word process should routinely be added to the current term, ACP, to remind and inform older persons and professionals of the dynamic nature of the advance care planning process (ACPP). To reach more people and ensure consistent and ongoing access to the ACPP each of us has a role in (i) working with older persons sooner in their disease processes and (ii) being politically active within our governments and

The Relationship Between Organizational Characteristics and Advance Care Planning Practices

Organizational characteristics may impede the uniform adoption of advance care planning (ACP) best practices. We conducted telephone interviews with site directors of a Midwestern state’s Medicaid waiver program administered by the Area Agencies on Aging and surveyed the 433 care managers (registered nurses and social workers) employed within these 9 agencies. Care managers at 2 agencies reported more frequent ACP discussions and higher levels of confidence. Both sites had ACP training programs, follow-up protocols, and informational packets available for consumers that were not consistently available at the other agencies. The findings point to the need for consistent educational programs and policies on ACP and more in depth examination of the values, beliefs, and resources that account for organizational differences in ACP.

Factors Associated With Advance Care Planning Discussions by Area Agency on Aging Care Managers

Background: Initiating advance care planning (ACP) discussions in the home may prevent avoidable hospitalizations by elucidating goals of care. Area agencies on aging care managers (AAACMs) work in the home with high-risk consumers. Purpose: To determine which AAACM characteristics contribute to an increased frequency of ACP discussions. Method: Cross-sectional investigator-generated surveys administered to AAACMs at 3 AAAs in Ohio. Results: Of 289 AAACMs, 182 (63%) responded. The more experience and comfort AAACMs felt with ACP discussions, the more likely they were to initiate ACP discussions. Discussion: It may be necessary to build interactive educational experiences where, for example, AAACMs are asked to fill out their own advance directives and/or facilitate others in ACP discussions to improve experience and comfort with ACP discussions.

Outcomes of non-STEMI patients transported by emergency medical services vs private vehicle ☆

BACKGROUND Non-ST-segment elevation myocardial infarctions (NSTEMIs) are more common but less studied than ST-segment elevation myocardial infarctions (STEMIs) treated by emergency medical services (EMS). OBJECTIVE The purpose of this study was to evaluate the differences in baseline characteristics and outcomes of NSTEMI patients when arriving by EMS vs self-transport. METHODS We performed a retrospective medical record review of 96 EMS patients and 96 self-transport patients with the diagnosis of NSTEMI based on billing code. RESULTS The mean age of patients arriving by EMS was 75 vs 65 years for self-transport patients (P≤ .000). Patients arriving by self-transport received cardiac catheterization more often than patients arriving by EMS (84% vs 49%, P≤ .001). Emergency medical services patients had significantly longer average hospital length of stay and intensive care unit length of stay than did patients arriving by self-transport (6.5 vs 4 days [P≤ .001] and 4.1 vs 2.7 days [P= .019]). Significantly more EMS patients were discharged to a new extended care facility (25% vs 3.1%, P≤ .001). Finally, more EMS patients died in the hospital (18.8 vs 4.2%, P= .002). CONCLUSIONS Patients with NSTEMI who arrived by EMS are older, are more ill, and have worse outcomes compared with patients who arrived by self-transport. Further research into patient reasoning for mode of transportation to the ED may influence public health interventions, public policy development, and EMS and hospital protocols for management of NSTEMIs. The high mortality in prehospital cohort should prompt further investigation to develop evidence-based protocols.

Twin-twin transfusion syndrome screening and diagnosis in the United States: A triangulation design of patient experiences

Objective Using patient-reported experiences, this study: 1) quantitatively evaluated TTTS screening trends, 2) examined screening and diagnostic experiences using a mixed methods approach, and 3) determined gaps in clinical care experiences. Design This was a cross-sectional study. Data was collected using a self-report, retrospective survey. A triangulation design was used to validate quantitative survey data with thematically analyzed qualitative data. Setting Participants were recruited through social media and national foundations and completed the survey online. Participants Participants were 312 women who completed a TTTS pregnancy in the United States, representing the largest survey of participants who have experienced TTTS. Methods Descriptive statistics and bivariate analyses were conducted. Multivariate logistic regression examined predictors of ultrasound frequency. Qualitative data were initially coded by hand and checked using qualitative software. Results The percentages of participants reporting guideline recommended screening, including identification of pregnancy type by gestational week 13 and timely receipt of ultrasounds, increased over time. However, 44.6% of participants diagnosed in recent years (2014 and later), reported that prior to TTTS diagnosis, they did not receive biweekly or more frequent ultrasounds. Three patient-reported provider practices were related to receiving ultrasounds at the recommended frequency: (1) determining MCDA status prior to gestational week 14, (2) providing participants with early warnings about the risk of TTTS to their pregnancies after MCDA status had been determined, and (3) referring participants to a Maternal-Fetal Medicine Specialist after MCDA identification, as validated by qualitative data. Our qualitative data revealed gaps in effective clinical care experiences among OB/GYN and specialist providers. Conclusion These findings indicate screening and diagnosis for TTTS, as reported by patients, is improving in the United States; however, further efforts are required to ensure all patients receive appropriate screening, education and a team-based approach to comprehensive and supportive clinical care.

Twin–Twin Transfusion Syndrome and Maternal Symptomatology—An Exploratory Analysis of Patient Experiences When Reporting Complaints

Objective: The aim of this study was to assess patient experiences when reporting symptoms of twin–twin transfusion syndrome (TTTS) to their health-care providers. Methodology: The study utilized an online, retrospective survey of women, over the age of 18, who were living in the United States at the time of their pregnancy and had completed a TTTS pregnancy. Results: Three hundred sixty-seven cases were included for analysis. Nearly half of the respondents (45.2%) reported experiencing maternal symptoms prior to TTTS diagnosis. The average number of symptoms experienced was 2.85. The average gestational week of symptom onset was 18.2. A total of 76.2% of respondents experiencing symptoms shared these concerns with their health-care provider; however, slightly more than half (51.2%) believed that the provider dismissed their complaints. Conclusions: Results suggest a disconnect between patients’ reporting TTTS symptoms and health-care providers responding attentively, as perceived by the patient. It would be advantageous for health-care providers to inform women pregnant with a monochorionic–diamniotic pregnancy to immediately report the presence of any symptom described in the present research, which may be associated with any number of twin pregnancy–related complications.