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PURPOSE: We examined the use of advance care planning (ACP) among Medicare beneficiaries who were identified as transgender. METHODS: This study is a cross-sectional analysis of Medicare claims from 2016 to 2018, comparing ACP visits between transgender and other beneficiaries. RESULTS: Beneficiaries identified as transgender were slightly more likely than those who were dual eligible for Medicaid and Medicare, and the remaining fee-for-service Medicare population, to have received a claim for ACP. However, racial and ethnic differences exist and transgender beneficiaries were more likely to receive an ACP claim from hospice/palliative care clinicians compared with primary care clinicians relative to other beneficiaries. CONCLUSIONS: Differences in ACP provision may exacerbate disparities in access to ACP benefits faced by transgender patients.

This project illuminates the unique struggles and barriers lesbians face. A community advisory board (CAB) was developed and 31 in-depth interviews were conducted with lesbians aged 56-84 in the Rocky Mountain region. Interviews were audio recorded, transcribed, and coded using critical discourse analysis. Themes included: a culture of identity-hiding; lack of recognition and discrimination in health care; channeling passion, fear, and anger into action; concerns about aging; and identified health needs and opportunities. There is a need for innovative and equitable services that understand the barriers and struggles that older lesbian adults face so they can receive high-quality care.

Approximately one million gay and lesbian Americans are veterans. Lesbian, gay, bisexual, and transgender (LGBT) veterans experience high rates of trauma, discrimination, and minority stress and sh...

Lesbian, gay, bisexual, and transgender (LGBT) older adults are at particular risk for receiving inequitable end-of-life care. Their health care wishes may be ignored or disregarded, their families of choice are less likely to be included in their decision making, and they may experience increased isolation, bullying, mistreatment, or abuse, which ultimately contribute to receipt of poor-quality health care. This is particularly important during sensitive transitions along the care continuum to end-of-life settings; 43% of respondents of a 2018 survey of 865 hospice professionals reported having directly observed discriminatory behavior toward LGBT patients. Lack of visibility and accountability perpetuates vulnerabilities and the potential for discriminatory treatment. Unfortunately, while other areas of health care have prioritized and normalized collecting sexual orientation and gender identity (SOGI) data, hospices do not routinely assess patients’ SOGI in the context of end-of-life wishes and decisions. Drawing insight from a sample of 31 in-depth interviews with older LGBT adults, this paper focuses on one participant’s story—Esther’s. We chose her story to illustrate how care can be compromised at the end of life if an open discussion with patients about what and who matters most to them at the end of life, is avoided.

Lesbian, gay, bisexual, and transgender (LGBT) seniors face disparities in physical and mental health as well as high rates of social isolation and risk of discrimination in comparison to cisgender, heterosexual people. Having identities and experiences silenced by real or perceived risks of discrimination increases isolation and vulnerability for marginalized communities and individuals. This article presents the case of Janelle, a senior, transgender lesbian, and her experiences of isolation and intersecting disparities before and during the COVID-19 pandemic, and how those experiences shape her concerns about the future. Her experiences demonstrate the ways in which the health and social risks presented by the pandemic exacerbate preexisting vulnerabilities for older LGBT adults.

Objectives To quantify the frequency and type of medication decisions on discharge from the hospital to hospice care. Design Retrospective cohort study. Setting A 544-bed academic tertiary care hospital in Portland, Oregon. Participants A total of 348 adult patients (age ≥18 y) discharged to hospice care between January 1, 2010, and December 31, 2016. Measurements Data were collected from an electronic repository of medical record data and a manual review of patients' discharge summaries. Our outcomes of interest were the frequency and type of medication decisions documented in patients' discharge summaries. Medication decisions were categorized as continuation, continuation but with changes in dose, route of administration, and/or frequency, discontinuation, and initiation of new medications. We also collected data on the frequency of patient/family in the participation of medication-related decisions. Results Patients were prescribed a mean of 7.1 medications (standard deviation [SD] = 4.8) on discharge to hospice care. The most prevalent medications prescribed on discharge were strong opioids (82.5%), anxiolytics/sedatives (62.9%), laxatives (57.5%), antiemetics (54.3%), and nonopioid analgesics (45.4%). However, only 67.8% (213/341) of patients who were prescribed an opioid on discharge to hospice care were also prescribed a laxative. Discharging providers made a mean of 15.0 decisions (SD = 7.2) per patient of which 28.5% were to continue medications without changes, 6.7% were to continue medications with changes, 30.3% were to initiate new medications, and 34.5% were to discontinue existing medications. Patients and/or family members were involved in medication decisions during 21.6% of discharges; patients were involved in 15.2% of decisions. Conclusion Patients averaged more than 15 medication decisions on discharge to hospice care. However, it was rarely documented that patients and/or their families participated in these decisions. J Am Geriatr Soc, 2019.

Primary care providers often express a desire to be more involved with their patients as they transition to hospice care. Given that these providers have a central role in the care of their patients, they have the potential to significantly improve the experiences of lesbian, gay, bisexual, transgender, and queer patients who face serious illnesses. This article discusses the barriers to quality hospice and palliative care experienced by many sexual and gender minorities, as well as specific ways in which primary care physicians can promote equitable end-of-life care.

Sexual and gender minority (SGM) cancer survivors (post-diagnosis to end-of-life) can face inadequate services along the cancer care continuum, including palliative and end-of-life (EOL) care. A growing literature base calls for more research on factors influencing palliative and EOL care access, outcomes, and distinct needs of SGM cancer survivors and caregivers. We analyzed peer-reviewed articles published 2015-present to identify trends. Ten articles were SGM-focused or inclusive, cancer-focused, and included substantive discussion of palliative and/or EOL care. Four were research studies (three case studies and one qualitative interview study) and six were literature reviews. Recurrent topics included disparities in cancer risk, access, and care; essential cultural and clinical competencies; and need for professional and organizational standards and policies addressing interpersonal and institutional discrimination and inclusion. Provision of equitable, competent palliative and EOL care depends on continued advancements in research, translated into person-centered approaches to care. We discuss implications of findings for improving palliative and EOL care for SGM cancer survivors.

Advance care planning (ACP) can promote patient-centered end-of-life (EOL) care and is intended to ensure that medical treatments are aligned with patient's values. Sexual and gender minority (SGM) people face greater discrimination in health care settings compared with heterosexual, cisgender people, but it is unknown whether such discrimination occurs in ACP and how it might affect the ACP experiences of SGM people.To increase understanding of barriers and facilitators of ACP facing SGM individuals.This mixed-methods national study of ACP included a telephone survey of self-identified SGM and non-SGM participants in a nationally representative sample drawn from a larger omnibus national panel by SSRS. Qualitative interviews were conducted with a subset of survey participants who identified as SGM. Data were collected from October 2020 to March 2021.Self-identified SGM.The survey included 4 items from the validated ACP Engagement Survey, adapted to capture experiences of discrimination. Interviews asked about participants' experiences with ACP, including the appointment of medical decision-makers, sharing preferences, and experiences within the health care system more broadly.A total of 603 adults participated in the survey, with 201 SGM individuals (mean [SD] age, 45.7 [18.7] years; 101 [50.2%] female; 22 [10.9%] Black, 37 [18.4%] Hispanic, and 140 [69.7%] White individuals) and 402 non-SGM individuals (mean [SD] age, 53.7 [19.2] years; 199 [49.5%] female; 35 [8.7%] Black, 41 [10.2%] Hispanic, and 324 [80.6%] White individuals). Regarding reasons for not completing ACP, SGM respondents, compared with non-SGM respondents, were more likely to say "I don't see the need" (72 [73.5%] vs 131 [57.2%], P = .006) and "I feel discriminated against by others" (12 [12.2%] vs 6 [2.6%], P .001). Of 25 completed interviews among SGM participants, 3 main themes were identified: how fear and experiences of discrimination affect selection of clinicians and whether to disclose SGM identity; concerns about whether EOL preferences and medical decision-makers would be supported; and a preference to discuss EOL decisions and values outside of clinical settings.This study found that fear of disclosing sexual orientation or gender identity information and discrimination are important barriers to ACP for SGM in clinical settings, but discussions of preferences and values still occur between many SGM people and medical decision-makers. More SGM-specific patient-centered care might better support these discussions within the health care system. Furthermore, health systems can facilitate improved engagement by supporting clinician sensitivity training, including guidance on documentation and requirements.

Sexual and gender minority (SGM) cancer survivors (post-diagnosis to end-of-life) can face inadequate services along the cancer care continuum, including palliative and end-of-life (EOL) care. A growing literature base calls for more research on factors influencing palliative and EOL care access, outcomes, and distinct needs of SGM cancer survivors and caregivers. We analyzed peer-reviewed articles published 2015-present to identify trends.Ten articles were SGM-focused or inclusive, cancer-focused, and included substantive discussion of palliative and/or EOL care. Four were research studies (three case studies and one qualitative interview study) and six were literature reviews. Recurrent topics included disparities in cancer risk, access, and care; essential cultural and clinical competencies; and need for professional and organizational standards and policies addressing interpersonal and institutional discrimination and inclusion. Provision of equitable, competent palliative and EOL care depends on continued advancements in research, translated into person-centered approaches to care. We discuss implications of findings for improving palliative and EOL care for SGM cancer survivors.

Background: Care transitions from the hospital to hospice are a difficult time, and gaps during this transitions could cause poor care experiences and outcomes. However, little is known about what gaps exist in the hospital-to-hospice transition. Objectives: To understand the process of hospital-to-hospice transition and identify common gaps in the transition that result in unsafe or poor patient and family caregiver experiences. Design: We conducted a qualitative descriptive study using semistructured interviews with health care workers who are directly involved in hospital-to-hospice transitions. Participants were asked to describe the common practice of discharging patients to hospice or admitting patients from a hospital, and share their observations about hospital-to-hospice transition gaps. Setting/Subjects: Fifteen health care workers from three hospitals and three hospice programs in Portland, Oregon. Measurements: All interviews were audio recorded and analyzed using qualitative descriptive methods to describe current practices and identify gaps in hospital-to-hospice transitions. Results: Three areas of gaps in hospital-to-hospice transitions were identified: (1) low literacy about hospice care; (2) changes in medications; and (3) hand-off information related to daily care. Specific concerns included hospital providers giving inaccurate descriptions of hospice; discharge orders not including comfort medications for the transition and inadequate prescriptions to manage medications at home; and lack of information about daily care hindering smooth transition and continuity of care. Conclusion: Our findings identify gaps and suggest opportunities to improve hospital-to-hospice transitions that will serve as the basis for future interventions to design safe and high-quality hospital-to-hospice care transitions.

Introduction: Advance care planning (ACP) is a process in which patients, families, and providers discuss and plan for desired treatment goals. American Indian and Alaska Native people (AI/AN) have higher prevalence of many serious, life-limiting illnesses compared with the general population; yet AI/ANs use ACP considerably less than the overall population. Method: We conducted a qualitative study to culturally adapt an existing ACP intervention for AI/ANs in two primary care settings. Results: We found that it is important to incorporate patients’ cultural values and priorities into ACP, determine who the patient wants involved in ACP conversations, and consider the culturally and locally relevant barriers and facilitators when developing an ACP intervention with AI/AN communities. Discussion: At the core, ACP interventions should be clear and understandable across populations and tailored to facilitate culturally appropriate and meaningful patient–provider communication. Our results and methodology of culturally adapting an intervention may be applicable to other underrepresented populations.

Objective The objective of this paper is to understand patient, caregiver and hospice admission nurses needs during the hospice admission conversation so patients and their caregivers can make informed decisions about hospice. Methods Resulting data set from this qualitative study included 60 h of observation and a total of 30 interviews with caregivers, patients and hospice admission nurses. Participants were from a large non-profit hospice; observation settings included: home, hospital and skilled nursing facility. Results Four themes were identified: (1) Wide variation in patient knowledge of hospice care prior to the admission conversation, (2) competing expectations and objectives for the admission conversation between patients, caregivers and hospice admission team members, (3) organizational influences around the goals of the admission conversation, (4) importance of integrating the patient and caregiver perspective to improve the quality of admission conversations. Conclusion Hospice services provided may be inconsistently explained by hospice personnel and therefore, can be misunderstood by patients and families. With the ubiquitous challenges surrounding hospice admission consults, there is a critical need for complete and accurate information during the admission process. Practice Implications Providing accurate and pertinent information at the time of the admission consult can help mitigate misinformed expectations of services provided.

This empirical investigation addresses four paradigmatically framed research questions to illuminate the epistemological status of the field of health communication, systematically addressing the limitations of existing disciplinary introspections. A content analysis of published health communication research indicated that the millennium marked a new stage of health communication research with a visible shift onto macro-level communication of health information among nonhealth professionals. The analysis also revealed the emergence of a paradigm around this particular topic area, with its contributing scholars predominantly sharing postpositivistic thought traditions and cross-sectional survey-analytic methodologies. More interdisciplinary collaborations and meta-theoretical assessments are needed to facilitate a continued growth of this evolving paradigm, which may advance health communication scholars in their search for a disciplinary identity.

The cost of reimbursement that we are getting from the government doesn’t even come close to covering our cost. We had to close our inpatient hospice unit because we did not want to give substandar...

Near the end of life, hospice care reduces symptom-related distress and hospitalizations while improving caregiving outcomes. However, it takes time for a person to gain a sufficient understanding of hospice and decide to enroll. This decision is influenced by knowledge of hospice and its services, emotion and fear, cultural and religious beliefs, and an individual’s acceptance of diagnosis. Hospice admission interactions, a key influence in shaping decisions regarding hospice care, happen particularly late in the illness trajectory and are often complex, unpredictable, and highly variable. One goal of these interactions is ensuring patients and families have accurate and clear information about hospice care to facilitate informed decisions. So inconsistent are practices across hospices in consenting patients that a 2016 report from the Office of Inspector General (OIG) entitled “Hospices should improve their election statements and certifications of terminal illness” called for complete and accurate election statements to ensure that hospice patients and their caregivers can make informed decisions and understand the costs and benefits of choosing hospice care. Whether complete and accurate information at initial admission visits improves interactions and outcomes is unknown. Our recent qualitative work investigating interactions between patients, caregivers, and hospice nurses has uncovered diverse and often diverging stakeholder-specific expectations and perceptions which if not addressed can create discordance and inhibit decision-making. This paper focuses on better understanding the communication dynamics and practices involved in hospice admission interactions in order to design more effective interactions and support the mandate from the OIG to provide hospice patients and their caregivers with accurate and complete information. This clarity is particularly important when discussing the non-curative nature of hospice care, and the choice patients make to forego aggressive treatment measures when they enroll in hospice. In a literal sense, to enroll in hospice means to bring in support for end-of-life care. It means to identify the need for expertise around symptom management at end-of-life, and agree to having a care team come and manage someone’s physical, psychosocial, and/or spiritual needs. As with all care, hospice can be stopped if it is no longer considered appropriate. To uncover the communication tensions undergirding a hospice admission interaction, we use Street’s ecological theory of patient-centered communication to analyze a case exemplar of a hospice admission interaction. This analysis reveals diverse points of struggle within hospice decision-making processes around hospice care and the need for communication techniques that promote trust and acceptance of end-of-life care. Lessons learned from talking about hospice care can inform other quality initiatives around communication and informed decision-making in the context of advance care planning, palliative care, and end-of-life care.

Healthcare environments have become increasingly complex, especially around the end of life. As they become more complex, organizational members are often pulled in competing directions as they manage to bring order to what otherwise would be a disorderly world. This extensive ethnographic study of a hospice and an emergency department (ED) critically analyzes the nature of discourse and its resulting accomplishments. I use the notion of ‘taming’ to describe the way providers talk about and make sense of their work and work environment, and the consequences it has for their own personal well-being, as well as for care around the end of life. The goal is to elucidate how reclaiming struggle and choice over meaning production is needed for healthcare challenges of the 21st century.

PURPOSE Primary care physicians play unique roles caring for complex patients, often acting as the hub for their care and coordinating care among specialists. To inform the clinical application of new models of care for complex patients, we sought to understand how these physicians conceptualize patient complexity and to develop a corresponding typology. METHODS We conducted qualitative in-depth interviews with internal medicine primary care physicians from 5 clinics associated with a university hospital and a community health hospital. We used systematic nonprobabilistic sampling to achieve an even distribution of sex, years in practice, and type of practice. The interviews were analyzed using a team-based participatory general inductive approach. RESULTS The 15 physicians in this study endorsed a multidimensional concept of patient complexity. The physicians perceived patients to be complex if they had an exacerbating factor—a medical illness, mental illness, socioeconomic challenge, or behavior or trait (or some combination thereof)—that complicated care for chronic medical illnesses. CONCLUSION This perspective of primary care physicians caring for complex patients can help refine models of complexity to design interventions or models of care that improve outcomes for these patients.

Background Emergent situations and settings actively present a unique range of barriers to meaningful conversations about treatment preferences that can derail authentic shared decision making processes in the context of advanced care planning. Aims Aim 1: Identify parameters/dimensions and conditions that support high quality advanced care planning decision making processes. Aim 2: Describe language choices that facilitate/constrain healthcare providers achieving a shared understanding of care needs and optimal advance care planning. Methods This study uses observational and recorded data from interactions between patients, their caregivers and health care providers within a local Emergency Department to examine specific patterns of participant language use that ensure mutually productive and sustainable patient-family-provider advanced care planning conversations. Results Preliminary results indicate interactional opportunities for creating and sustaining effective advanced care planning conversations as a process at hospital admission, during clinical deterioration, and following transfer to hospice, a nursing home or the ICU. Discussion and conclusion Emergent settings force healthcare professionals to reconceptualize advanced care planning conversations as living, evolving processes. Doing so provides interactional partners with multiple opportunities to negotiate and overcome barriers to shared decision making in emergent settings. Focused communication and decision-making guides as well as specific education in interaction design for advanced care planning conversations can advance the efficiency and effectiveness of decision making processes in emergent settings and establish quality standards for clinician-patient communication, in the advance care planning context.

Background Complex patients are increasingly common in primary care and often have poor clinical outcomes. Healthcare system barriers to effective care for complex patients have been previously described, but less is known about the potential impact and meaning of caring for complex patients on a daily basis for primary care providers (PCPs). Our objective was to describe PCPs’ experiences providing care for complex patients, including their experiences of health system barriers and facilitators and their strategies to enhance provision of effective care. Methods Using a general inductive approach, our qualitative research study was guided by an interpretive epistemology, or way of knowing. Our method for understanding included semi-structured in-depth interviews with internal medicine PCPs from two university-based and three community health clinics. We developed an interview guide, which included questions on PCPs’ experiences, perceived system barriers and facilitators, and strategies to improve their ability to effectively treat complex patients. To focus interviews on real cases, providers were asked to bring de-identified clinical notes from patients they considered complex to the interview. Interview transcripts were coded and analyzed to develop categories from the raw data, which were then conceptualized into broad themes after team-based discussion. Results PCPs (N = 15) described complex patients with multidimensional needs, such as socio-economic, medical, and mental health. A vision of optimal care emerged from the data, which included coordinating care, preventing hospitalizations, and developing patient trust. PCPs relied on professional values and individual care strategies to overcome local and system barriers. Team based approaches were endorsed to improve the management of complex patients. Conclusions Given the barriers to effective care described by PCPs, individual PCP efforts alone are unlikely to meet the needs of complex patients. To fulfill PCP’s expressed concepts of optimal care, implementation of effective systemic approaches should be considered. Electronic supplementary material The online version of this article (doi:10.1186/s12875-016-0433-z) contains supplementary material, which is available to authorized users.