Journal of Psychosocial Oncology

Book review:
LGBTQ-Inclusive Hospice and Palliative Care, by Kimberly Acquaviva

Kimberly Acquaviva’s LGBTQ-inclusive hospice and palliative care: A practical guide to transforming professional practice is a response to the absence of evidence-based guidelines for LGBTQ-inclusive palliative and hospice care. Purposefully structured as an accessible read for experienced and novice physicians, nurses, social workers, counselors, spiritual care providers and health care administrators, this practical guide implores individuals and institutions to move from generalist palliative and hospice care towards LGBTQ-inclusive care.

Acquaviva’s recognition that LGBTQ-inclusive health care requires a simultaneous shift in attitude, knowledge, skills and policy frames the book content. She begins by guiding readers through CAMPERS: (Clear purpose, Attitudes and beliefs, Mitigation plan, Patient, Emotions, Reactions and Strategy)–a seven-step reflective process for ensuring inclusive, nonjudgmental care in each interaction. Next, Acquaviva responds to the complexity of human physiology, behavior, and identity by providing accessible plain language definitions related to the concepts of sex, gender, and sexual orientation. After a review of historical and current issues affecting LGBTQ patients, the author engages readers in a process of shifting perspectives from the everpresent pathological model towards the Five Dimensions Assessment Model, which prioritizes the “Patient as Person” (p.65). In the remaining chapters Acquaviva incorporates clinical examples–reflective of her extensive practice and research experience with LGBTQ communities, discussion questions, interactive activities and sample tools to help readers translate the theoretical knowledge into practice. She addresses assessment and physical exam, care planning, shared decision making, family dynamics, patient and family education, psychosocial and spiritual care, and ethically and legally-informed care. She also provides concrete techniques to kindle respect and rapport throughout the assessment process, while offering cues for gentle ways to approach often neglected topics such as patients’ sexual health and intimacy goals. The sample tools such as the questions about a patient’s preferred name, gender pronouns, family of origin and family of choice provide immediate opportunities for practice application. Finally, the book concludes with methods to promote institutional inclusiveness.

Most refreshing is Acquaviva’s use of an intersectional lens to illustrate how race, ethnicity, religion, language and socioeconomic status interact with gender identity and sexual orientation, resulting in unique life experiences and differential access to resources (e.g., housing and job security). By choosing to examine health care through the intersectional lens, Acquaviva highlights the negative effects of essentializing LGBTQ identities on the care quality and helps the readers recognize the importance of approaching each patient as a unique individual belonging to many communities. Lastly, Acquaviva ensures that examples of historical, political, institutional and sociocultural issues that affect LGBTQ patients’ lives– history of homosexuality as a DSM mental health diagnosis for example–are included throughout the book. We especially appreciate Acquaviva’s final chapter, which provides tangible guidelines for institutional changes including organizational nondiscrimination statement; human resources policies for staff hiring, orientating, and training; intake forms and processes; and LGBTQ-inclusive marketing and community engagement.

Surprisingly, despite her central focus on LGBTQ inclusion, Acquaviva fails to connect the need for LGBTQ-inclusive hospice and palliative care to the larger movement for health equity. While she discusses the effects of the long history of anti-LGBTQ bias in healthcare to patients’ willingness to seek health care, including hospice and palliative care, she does not discuss how these issues connect to the many health disparities affecting LGBTQ communities (e.g., lower rates of mammography and Pap smear screening; higher rates of smoking, alcohol intake and unhealthy weight control). Literature links these health inequities with the lack of inclusive LGBTQ care and minority stress, which refers to discrimination, stigma and internalized homophobia. Furthermore, with limited discussions about transitions from curative to end-of-life care, Acquaviva overlooks a critical juncture in patient care. These transitions may create heightened worries for LGBTQ patients and loved ones who may embody a lifetime of fear, discrimination, and social isolation. The Department of Health and Human Services Healthy People 2020, National Academy of Medicine, and The Joint Commission are just a few examples of influential health organizations documenting LGBTQ health disparities and emphasize healthcare organizations’ and providers’ responsibility to address them. Acquaviva appeals to the healthcare providers’ sense of compassion as a motivation to ensure LGBTQ-inclusive hospice and palliative care. Appealing to their sense of professional responsibility and social justice is equally important.

Acquaviva succeeds in engaging readers through a balanced presentation of evidence-based generalist hospice and palliative care with pragmatic suggestions for cultivating LGBTQ-inclusive end-of-life care. As a result, we are confident that this inexpensive guide will be a useful resource for healthcare practitioners and institutions establishing LGBTQ-inclusive healthcare. At the same time, we recommend that the readers supplement the guide with additional publications which specifically address LGBTQ-inclusive health care in the context of the broader health equity framework. The Lesbian, Gay, Bisexual, and Transgender Health section of the Healthy People 2020 or the National Academy of Medicine 2011 report The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding are good starting points.