A Challenge to Think Critically about Inclusivity in Palliative Care
The Handbook of LGBTQIA-Inclusive Hospice and Palliative Care
Kimberly D. Acquaviva
Columbia University Press, 2023
376 pp, softcover
ISBN: 978-023120-6433
MSRP: $35, £30
Also available: hardcover, Ebook
Kimberly D. Acquaviva’s The Handbook of LGBTQIA-Inclusive Hospice and Palliative Care offers a thoughtful and practical approach to ensuring palliative care is inclusive of LGBTQIA+ individuals. Written in an approachable and conversational tone, the book invites clinicians, institutions, and care teams to consider how inclusivity can become a natural and integrated part of care practices.
This easy-to-read book illustrates how to provide inclusive palliative care as a holistic service. The author writes from her experience as a palliative care social worker, and cis-gendered woman identifying as lesbian, mother, and carer to her dying partner. Her reflections highlight where changes in practice and knowledge improve the experience both for lesbian, gay, bisexual, transgender, nonbinary, gender nonconforming, queer, questioning, intersex, and/or asexual (LGBTQIA+) patients and their palliative care practitioners.
As you read the book you follow through updates from both women as the dying process continues. They chose not to have hospice home care (they live in North America) due to concerns that they might receive less than optimal and/or inclusive palliative care by an external service. Like many others, they wished to have as much uninterrupted time as a family unit as possible.
One of the book's strengths is its holistic approach to care; the 11 chapters are designed to address issues at three levels: individual, institutional, and systemic. Each chapter starts with chapter outcomes describing what you will be able to do with the information, a chapter summary, and key terms. The chapters conclude with "Points to Remember," "Discussion Questions" and a "Chapter Activity." This structure encourages thoughtful personal reflection as well as opportunities for team-based discussion.
The Chapter Activity offers practical exercises to help generate change. In Chapter 9, Psychosocial and Spiritual Issues, is the exercise "contact a palliative care chaplain and ask to meet to learn more about the chaplain’s role on the interdisciplinary/interprofessional team." It offers suggestions, such as "ask about spiritual distress and how it presents in individuals receiving palliative care. Also ask about the chaplain’s experiences working with LGBTQIA+ individuals and families, and the ways the chaplain has provided support." Or, from Chapter 2, Sex, Gender, Sexual Orientation, Behavior, and Health, an exercise is: "for the next week, hide your sexual orientation from everyone you come into contact with. During this week you may not refer to a spouse or significant other with gender-identifying pronouns or hold hands in public. Keep a journal and think about how much energy it took to hide who you are from other people."
As a whole, the book had a comprehensive psychosocial approach to providing care, commensurate with the author’s area of expertise. This included chapters on family meetings, helping individuals and families to identify their own unique goals of care, refocusing interdisciplinary meetings on person-centered outcomes of care, ethical and legal issues, educating families around disease progression and care skills, and the developmental tasks of life closure as well as its associated roles of hope, meaning, and despair.
The LGBTQIA+ information was woven through the book, demonstrating a model of inclusivity within a textbook. Despite this, I was interested to note that my reaction while reading was one of wanting the specialist information in this area, such as understanding terminology, historical precedents for lower levels of engagement, and how to conduct an organ inventory. I wanted to know what I needed to know to provide appropriate care and to not make alienating mistakes. This desire for a specialist chapter on LGBTQIA+ information in textbooks is directly addressed by the author and reflects the continued “othering” of these communities.
I came away with a different way of thinking about how services, institutions, and systems can be changed in a positive way to provide inclusive palliative care to people identifying as LGBTQIA+. By a natural extension, this includes advocacy for considerate, considered, and thorough palliative care, which lends itself to meeting the needs of many other groups. Throughout the book there are many examples of communication prompts and questions that encourage reflective, person-centered care.
Overall, I found the book to be both refreshing and challenging. The first activity I will be addressing with my service is reviewing our non-discrimination statement. As I have just discovered, writing a non-discrimination statement that has inclusive language as required by multiple anti-discriminatory laws—including labor and employment laws—is showing me that inclusivity has many different facets.
Dr. Anna Keedwell is a palliative care specialist with Bendigo Health, Australia.
(Reviewed in February 2025)
Read more of this week's issue of Pallinews
Taking advocacy action at the WHO executive board meeting, in East Africa, and through a slew of webinars
This month's report by IAHPC Senior Director of Advocacy and Partnerships Katherine Pettus.
Spotlight on North Macedonia
The country needed a plan to expand to meet current & growing palliative care needs. Board Member Victoria Hewitt's reports on creating the plan's service framework, which relied on effective teamwork.