Journal of Pain & Symptom Management

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

When I first published my research on the perspectives of the lesbian and gay community regarding end-of-life care, advance care planning, and disclosure of sexual orientation a decade and a half ago, there was little awareness of the unique concerns and experiences of this community, or the importance of cultural proficiency in serving these individuals in palliative care settings. With growing interest in addressing the health needs and disparities among diverse cultural and demographic populations, it has been increasingly common for professional articles, conference presentations, and clinical guidelines to consider whether and how hospice and palliative care providers serve the LGBTQ community. Kimberly D. Acquaviva’s 2017 book on LGBTQ-inclusive practice is a promising addition to our field.

Dr. Acquaviva’s book provides an overview of hospice and palliative care practice, with chapters devoted to such topics as communication skills, the physical examination, decision making, care planning, legal concerns, patient and family education, and psychosocial and spiritual concerns. These chapters primarily present general concepts common to most hospice and palliative care practices, with, to varying degrees, helpful examples, illustrations, and quotes illustrating how they might impact LGBTQ patients and families. A few chapters are devoted to serving LGBTQ patients–understanding gender identity and expression, and sexual orientation; access and barriers to care facing the LGBTQ community; and institutional “inclusiveness.” Each chapter provides learning objectives, key points, discussion questions, and activities that are useful for academic settings.

I found those chapters addressing the LGBTQ community directly–understanding gender identity, expression, and sexual orientation; access and barriers to care facing the LGBTQ community; and institutional “inclusiveness”–to be useful for palliative care providers. There is considerable confusion about the overlapping issues and distinctions in appropriately meeting the needs of lesbian, gay, bisexual, transgender, and queer individuals and families; how to define and use these terms; and how to sensitively address individuals (e.g., with use of appropriate pronouns). Barriers to care have been documented, but providers will benefit from guidance on addressing them. Most importantly, providers are understandably unsure which institutional policies and practices need to change to better serve the community. This latter discussion was informative in identifying key points and suggestions for institutional enhancements, but I found myself desiring even greater guidance on crafting LGBTQ-inclusive intake, data, and assessment forms and on conducting sensitive intake and assessment interviews. Additional examples of inclusive institutional policies and programs would have been helpful.

Early learners of hospice and palliative care practice will appreciate the more general chapters on the components of hospice and palliative care practice, as this material is thoughtful and comprehensive. In a broader context, LGBTQ examples can be generalized to considerations regarding cultural sensitivity in everyday practice. These chapters may be less useful for seasoned providers, who will likely focus on the more LGBTQ-focused sections.

This book is a useful addition to the literature promoting culturally proficient palliative care. Further work will be needed to comprehensively examine the larger evidence base, especially on staff training, program models, institutional policies, and clinical practices that effectively, and more equitably, serve the LGBTQ community.

Reviewed by Gary L. Stein, JD, MSW