Project Respect: experiences of seriously ill LGBTQ+ patients and partners with their health care providers.

Discrimination against lesbian, gay, bisexual, transgender, and queer (LGBTQ+) persons in health care creates barriers to serious illness care, including patients avoiding or delaying necessary care, providers disrespecting wishes of surrogates, and adverse outcomes for patients and families. A cross-sectional mixed-methods study using an online survey was used to determine the extent to which LGBTQ+ patients and spouses, partners, and widows experienced disrespectful or inadequate care due to sexual orientation or gender identity. A total of 290 LGBTQ+ patients and partners reported high levels of disrespectful and inadequate care, including 35.

Advance care planning as perceived by marginalized populations: Willing to engage and facing obstacles.

Background: Health disparities exist in end-of-life (EOL) care. Individuals and communities that are marginalized due to their race, ethnicity, income, geographic location, language, or cultural background experience systemic barriers to access and receive lower quality EOL care. Advance care planning (ACP) prepares patients and their caregivers for EOL decision-making for the purpose of promoting high-quality EOL care.

Experiences of caregiving with Alzheimer's disease in the LGBT community.

Background: The goal of this paper is to develop a more thorough understanding of the experiences of LGBT older adults living with dementia and their caregivers.

Methods: A phenomenological approach using in-depth interviews with current or former caregivers of LGBT persons living with Alzheimer's disease (AD) was conducted.

Results: Participants ranged in age from 44-77 years old; 74% were lesbian, 16% gay, 5% straight, and 5% unknown.

Advance Care Planning Experiences Among Sexual and Gender Minority People.

Importance: 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.

Objectives: To increase understanding of barriers and facilitators of ACP facing SGM individuals.

Use of Advance Care Planning Codes Among Transgender Medicare Beneficiaries.

We examined the use of advance care planning (ACP) among Medicare beneficiaries who were identified as transgender. This study is a cross-sectional analysis of Medicare claims from 2016 to 2018, comparing ACP visits between transgender and other beneficiaries. 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.

In her own words: understanding the health needs of older lesbians.

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.

Improving the Hospice and Palliative Care Experiences of LGBTQ Patients and Their Caregivers.

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.

Palliative and End-of-Life Care for Sexual and Gender Minority Cancer Survivors: a Review of Current Research and Recommendations.

Purpose Of Review: 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.

"She's Dying and I Can't Say We're Married?": End-of-Life Care for LGBT Older Adults.

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.

Health Care Worker Perceptions of Gaps and Opportunities to Improve Hospital-to-Hospice Transitions.

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. 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.

Culturally Adapting an Advance Care Planning Communication Intervention With American Indian and Alaska Native People in Primary Care.

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. We conducted a qualitative study to culturally adapt an existing ACP intervention for AI/ANs in two primary care settings.

Development of a Community Advance Care Planning Guides Program and the RELATE Model of Communication.

Objective: Quality communication is an important aspect of advance care planning (ACP). This study evaluates a certification program that trains lay people in communication skills to support community-based ACP conversations.

Methods: The program was developed with an emphasis on communication skills training.

Frequency and Documentation of Medication Decisions on Discharge from the Hospital to Hospice Care.

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.

"I just need to know they are going to do what they say they're going to do with my mom." Understanding hospice expectations from the patient, caregiver and admission nurse perspective.

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.

Designing Effective Interactions for Concordance around End-of-Life Care Decisions: Lessons from Hospice Admission Nurses.

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.

Primary care providers' experiences caring for complex patients in primary care: a qualitative study.

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.

Primary care physician insights into a typology of the complex patient in primary care.

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.

Identifying the field of health communication.

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.