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. Low engagement in ACP among marginalized populations is thought to have contributed to disparity in EOL care. To advance health equity and deliver care that aligns with the goals and values of each individual, there is a need to improve ACP for marginalized populations. AIM: To describe how patients from marginalized populations experience and perceive ACP. METHODS: We used an interpretive phenomenological approach with semi-structured qualitative interviews. Participants were recruited from four primary care clinics and one nursing home in a US Pacific Northwest city. Thirty patients from marginalized populations with serious illness participated in individual interviews between January and December 2021. Participants were asked to describe their experiences and perceptions about ACP during the interviews. RESULTS: The mean age of 30 participants was 69.5; 19 (63%) were women; 12 (40%) identified as Asian/Pacific Islanders, 10 (33%) as Black; and 9 (30%) were non-native English speakers. Our three key findings were: 1) patients from marginalized populations are willing to engage in ACP; 2) there were multiple obstacles to engaging in ACP; and 3) meaningful ACP conversations could happen when clinicians listen. Although participants from marginalized populations were willing to engage in ACP, a fragmented and restrictive healthcare system and clinicians' biased behaviors or lack of interest in knowing their patients were obstacles. Participants who felt their clinicians took time and listened were encouraged to engage in ACP. CONCLUSION: Patients from marginalized populations are willing to engage in ACP conversations despite a common belief otherwise. However, obstacles to meaningful ACP conversations with healthcare providers exist. Clinicians need to be aware of these obstacles and listen to build trust and engage marginalized patients in mutually meaningful ACP conversations.

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. Five themes were identified from the analysis: Caregiver tension and isolation; financial stress & security; lack of social support & connection; engineering grief support, and entrapment of past and present stigma and discrimination. CONCLUSIONS: Discrimination related to LGBT status was an important theme over the participants' lives and occurred for several during dementia care. While other themes were similar to prior AD studies, LGBT status affected these other aspects of the caregiving experience. Findings can inform future programs that better meet needs of LGBT people and those who care for them.

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 35.2% stating their provider was insensitive to them because of their identity; 30% reporting their provider was unaware of LGBTQ+ health needs; 23.1% feeling judged; 20.7% experiencing rudeness; 20.3% stating providers did not use their correct pronouns; and 19.7% reporting their treatment decisions were disregarded. Black and Hispanic patients were 2-4 times more likely than non-Hispanic White patients to report discrimination. This study demonstrated high levels of disrespectful and inadequate care towards patients and partners due to being LGBTQ+, which was especially problematic for Black and Hispanic patients and those living in politically conservative regions. Recommendations include federal and state civil rights laws to prohibit LGBTQ+ discrimination and institutional practices to address discrimination, including cultural sensitivity training for staff.

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. Design, Setting, and Participants: 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. Exposures: Self-identified SGM. Main Outcomes and Measures: 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. Results: 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. Conclusions and Relevance: 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.

Use of Advance Care Planning Codes Among Transgender Medicare Beneficiaries.

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.

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. 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.

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. RECENT FINDINGS: 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.

"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. 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.

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

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.

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. The testing of the program included ACP Guides and conversation partners, who were hospice volunteers, to assess the use of communication skills in ACP conversations. The evaluation used direct observations of conversations between trained ACP Guides and conversation partners as well as semi-structured interviews with those trained to become ACP Guides and those participating in the conversation. RESULTS: Twenty-two ACP Guides participated in the testing phase with a retention rate of 100% completing all 4 sessions. The RELATE model of communication emerged during program development and testing. Evaluation of 15 ACP Guides having ACP conversations found that trained ACP Guides could use the RELATE model of communication to support ACP conversations. CONCLUSION: A community-academic partnership developed an ACP Community Guides Program that trained individuals to have community-based ACP conversations. Next steps include additional testing of the program and RELATE in small numbers, especially among minority populations, to evaluate acceptability and usability of this approach. PRACTICE IMPLICATIONS: Laypersons with concrete communication skills can facilitate effective peer-to-peer ACP conversations.

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

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.

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. 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.

"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. 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.

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. 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.