The Handbook of LGBTQIA-inclusive Hospice and Palliative Care is a comprehensive guide to providing inclusive palliative and hospice care to everyone, regardless of their self-identification. Following the author’s belief that LGBTQIA+ hospice and palliative care requires change at three levels – individual, institutional and systemic – the book aims to address all three, moving from the micro to the macro. In doing so, the book extends state-of-the-art palliative and hospice care practices (US-focused) by including LGBTQIA+ perspectives. Such a rethinking educates hospice and palliative care practitioners on how to provide person-centred care, how to be self-reflexive on a daily basis and how to handle their own stereotypes and stigmas. While centring LGBTQIA-related care, the book not only teaches how to care for LGBTQIA+ people facing serious or life-limiting illnesses; more generally, it demonstrates how to do justice to diverse experiences and identities of dying persons and their families and friends.
The book starts with introductory clarifications and communication suggestions regarding LGBTQIA+-inclusive care, then addresses end-of-life decision-making and, in the last two chapters, focuses on LGBTQIA+ inclusion on an institutional level. The first chapter, ‘Self-awareness and communication’, explores self-reflection and non-judgemental communication techniques. Chapter 2, ‘Sex, gender, sexual orientation, behaviour, and health’, explains terms related to LGBTQIA+ care in accessible language. In Chapter 3, ‘Understanding attitudes and access to care’, the author outlines the perceptual, financial and institutional barriers to care for LGBTQIA+ people and how practitioners can mitigate them. Chapter 4, ‘The history and physical examination’, explains how to understand a patient’s life story and organ inventory in a person-centred and non-medicalised way. Chapters 5 to 8 (‘Shared decision making and family dynamics’, ‘Care planning and coordination’, ‘Ethical and legal issues’, ‘Patient and family education and advocacy’) address the individual patient and their relation to the people they consider their family. These chapters discuss how practitioners can facilitate shared decision-making and set care goals with a patient and their family. Further, they highlight legal issues that might influence advanced care planning for LGBTQIA+ families, such as partners who may not have the legal right to make decisions for their loved one. They also describe how to sensibly educate family members about palliative and hospice care skills. Chapter 9, ‘Psychosocial and spiritual issues’, addresses spiritual aspects of care. Chapters 10 and 11 (‘Ensuring institutional inclusiveness’, ‘Advocating for change beyond the institution’) move to the institutional and systemic levels. The author gives hands-on advice on how to make a palliative/hospice care organisation more LGBTQIA+ inclusive, for example by having a visible and convincing non-discrimination statement on the website.
The book is intentionally written in a conversational tone and targeted towards care practitioners from medicine, nursing, chaplaincy and social work/counselling. In addition to providing hands-on recommendations and frameworks for daily use in hospice and palliative care practice, each chapter showcases ‘professional’ and ‘patient’ perspectives, and provides a summary of the chapter as well as discussion questions. This makes the book easily accessible to palliative and hospice care students. It must be noted, however, that the medical guidelines and practices are based on US standards, coming, for example, from the National Research Council or the National Hospice and Palliative Care Organization in the United States. Nonetheless, reading this book is recommended to practitioners outside of the US because it teaches basic terminology surrounding LGBTQIA+ patients and details the specific struggles that LGBTQIA+ patients and their palliative carers might face. Additionally, the personal story of the author caring for her dying wife, which is woven into the practical hospice care advice, shows the complexity of LGBTQIA+ care journeys regardless of national context.
While Kimberly Acquaviva acknowledges the necessity for change at three different levels (individual, institutional and systemic), the book focuses mainly on how professional carers can make a difference to the situation of an individual who is being cared for. Further attention could be given to the structural issues that are mentioned, but barely explicitly discussed, such as discrimination through laws and systems of normativity that lead to homo- or transphobia. Additionally, it is vital to add that strengthening collective action – for example through campaigning for change as a group – as well as highlighting the responsibility of people in positions of power are additional ways of advocating for LGBTQIA-inclusive care. The focus of the book on individual practitioners places the responsibility on the individual carer, which could feel overwhelming to readers. Thus, further work could discuss the responsibility of researchers, policy makers and the media. Further, owing to the book’s conversational tone, its many personal examples and its focus on applied palliative and hospice care, the book cannot be considered a traditional academic resource. Instead, its main contribution lies in raising awareness about LGBTQIA+-identifying persons in palliative and hospice care in a way that is accessible to practitioners who have not previously had training on LGBTQIA+-inclusive palliative care.
