Abstract
Kimberley D. Acquaviva’s book is an important contribution to the body of literature on hospice and palliative care. Although this outstanding text is specific and highly relevant to hospice and palliative care, it is also relevant for any health and social care provider across the continuum of care. Acquaviva draws attention to the role of health-care providers in modifying their practice to provide inclusive care to all of their patients and does so in a way that is both nonjudgmental and accessible. Her strategic choice to move away from identifying lesbian, gay, bisexual, transgender, questioning, queer (LGBTQ) individuals as “special populations” and instead to advocate for a paradigm shift where inclusive care is provided for all people sets the tone for the approach described within this text. Although specifically written for the disciplines of medicine, nursing, chaplaincy, and social work or counseling, this paradigm shift is arguably required for all professionals working in health and social care settings.
In order to move away from the common process of “othering” LGBTQ individuals, Acquviva provides concrete steps in Chapter 1 “Self-Awareness and Communication” for clinicians to engage in self-reflection about their own knowledge, attitudes, and beliefs about LGBTQ individuals and communities. Building on this self-reflection, Chapter 2 “Sex, Gender, Sexual Orientation, Behaviour and Health” starts at the core of the topic of LGBTQ-inclusive care, defining terms such as sexual orientation, gender dysphoria, and sexual expression. These two chapters can and should be utilized in any education and training with health and social care providers.
Aligning with the lifecourse theoretical perspective and highlighting the need to understand the social and historical contexts of patients (Bengtson, Elder, & Putney, 2005), Chapter 3 “Understanding Attitudes and Access to Care” includes a brief history of LGBTQ communities and the oppression and discrimination they have experienced over the last 75 years in the United States. For international readers, this Chapter can serve as a template and example for how to explore historical and current legacies of discrimination facing LGBTQ communities and individuals and to consider their relevance for those accessing care.
In Chapter 4, “The History and Physical Examination,” Acquaviva presents her Five-Dimension Assessment Model, informed by Knight and von Gunten’s (2004) Whole Patient Assessment: Nine-Dimensions framework. Acquaviva’s new model offers more emphasis on the patient being assessed as a person first, moving away from single focus on the patient’s illness. Building on her earlier chapters, Acquaviva’s inclusive model includes important questions on preferred pronouns, sexual orientation, and relational factors.
Subsequent chapters discuss shared decision-making in hospice and palliative care and the role of health-care providers during this time and explore legal concepts around advance care planning. Helpful case studies illustrate the complexities within shared decision-making and offer aspirational team approaches to working with individuals and families around the end-of-life decisions. The guidance around care planning and navigating the ethical and legal landscapes is a vital component of LGBTQ-inclusive care, and Acquaviva provides practical strategies to facilitate conversations around advance-care planning, an important clinical practice (Maingi, Bagabag, & O’Mahony, 2017) and a frequent gap in clinical interactions (Hughes & Cartwright, 2014).
Drawing on the Clinical Practice Guidelines for Quality Palliative Care (National Consensus Project for Quality Palliative Care, 2013), Acquaviva extends the evidence-based guidelines and offers support for the reader on how to ask questions in an inclusive way. She offers helpful assessment cues and prompts for patient-care skills in the activities of daily living (e.g., bathing, getting dressed, and transferring), medication management, and builds on Byock’s (1994) developmental landmarks and taskwork for the end of life. Acquaviva draws on the extant literature and guidelines around spiritual or existential history and assessments and links back to Chapter 1 to challenge providers to engage in reflective practice around their own spirituality. Although not explicit, this section links with Chapter 3, wherein reflection on historical and current discriminatory practices against LGBTQ communities within some faith communities may serve as an important lens when navigating conversations focused on spirituality at the end of life.
Acquaviva’s conversational tone makes the text easy to read; the various patient, provider, and personal perspectives included along with case examples bring the material to life. Each chapter includes additional resources for health-care providers to utilize, expanding their knowledge on the support that is available to them and concludes with key points to remember, discussion questions to answer, and a chapter activity to work on, providing readers with an opportunity to be reflective and apply their learning throughout the book. Acquaviva notes that this book is intended to supplement rather than replace clinical texts, and yet her contributions are a vital complement to existing guidelines and resources. Her book addresses biases, important concepts in gender and sexuality, and offers strategies for navigating complex situations that may challenge even the most educated and experienced health and social workers when it comes to offering LGBTQ-inclusive care. This text is an excellent resource and complement to the knowledge that health-care providers may have in order to become a more sensitive, reflective, compassionate, and inclusive health and social care provider.