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LGBTQ-Inclusive Hospice and Palliative Care: A Practical Guide to Transforming Professional Practice - Q&A with author Kimberly, D. Acquaviva

May 2017 | Kimberly D. Acquaviva, PhD, MSW

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If I wanted to transform hospice and palliative care for LGBTQ people and their families, I would need to write an accessible book that would give physicians, advanced practice registered nurses, registered nurses, social workers, counselors, and chaplains a common framework for providing inclusive care to all patients and families, not just those who are LGBTQ. So that’s the book I wrote.

Tell us about your background and professional work.

I’m a social worker teaching graduate nursing courses at The George Washington University School of Nursing where I serve as a tenured member of the faculty.  Before coming to GW, I worked as a hospice social worker in Florida.  Before that, I earned a Bachelor of Arts in Sociology, a Master of Social Work (MSW), and a PhD in Human Sexuality Education – all from different schools within the University of Pennsylvania. Today my scholarly work focuses on LGBTQ aging, hospice, and palliative care.   Earlier this year I launched em dash podcast, a show that explores people’s lived experiences of difference and diversity in the healthcare arena.  I’m married to Kathy Brandt and together we have a 17-year-old son, Greyson, and three dogs – Dizzy, Zippy, and Mitzi. 
 
What inspired you to write about LGBTQ-Inclusive Hospice and Palliative Care?

It’s hard to pinpoint just one - there were so many things that inspired me. When I was in my mid-20’s and my mother was dying, I found myself wishing that health care professionals understood how to initiate conversations about sex with patients facing serious illnesses. My mom had questions about sex that she didn’t feel she could ask her oncologist, so she asked me. If this book had been around back then, it might have spared me from having some pretty awkward conversations with my mom. The larger inspiration for the book, though, was a dawning awareness that I would never be able to transform how hospice and palliative is delivered to LGBTQ people and their families if I kept writing articles and giving presentations for audiences comprised of people who were already comfortable picking up those articles and walking into those presentations. If I wanted to transform hospice and palliative care for LGBTQ people and their families, I would need to write an accessible book that would give physicians, advanced practice registered nurses, registered nurses, social workers, counselors, and chaplains a common framework for providing inclusive care to all patients and families, not just those who are LGBTQ. So that’s the book I wrote. 
 
As you researched this topic, was there anything that surprised you?

The biggest surprise for me wasn’t about the topic but rather the writing process. I didn’t realize how hard it would be to write using plain language.  Writing clearly and concisely was much more difficult than I had anticipated.  Now that I’ve written a book using plain language, though, I can’t imagine writing any other way.
 
 
From your experience both in the field of aging and academia, how has the acceptance of LGBT patients and their families changed in hospice and palliative care settings?

That’s a difficult question to answer.  Little is known about the knowledge and attitudes of hospice and palliative care professionals regarding LGBTQ patients beyond what is known anecdotally.  Similarly, little is known about the care that LGBTQ patients receive.  Because questions about sex assigned at birth, current gender identity, and sexual orientation are not routinely asked in national surveys of hospice and palliative care patients, it’s impossible to determine whether LGBTQ patients and families receiving palliative care or hospice care have outcomes and satisfaction levels similar to their heterosexual and cisgender counterparts.   If the interest I’ve seen in my book from hospice and palliative care professionals nationwide is any indication, though, there’s every reason to hope that providing LGBTQ-inclusive care is a goal many hospice and palliative care professionals share.
 
 
What can LGBTQ people do to encourage their local palliative care and hospice programs to provide LGBTQ-inclusive care?

To help hospice and palliative care programs make the shift to LGBTQ-inclusive care, I created an assessment tool they can use in auditing their current policies and practices.  The tool, called “The Assessment Tool for LGBTQ-Inclusive Hospice and Palliative Care,” is available free for download at https://www.lgbtq-inclusive.com/resources-and-checklists. Feel free to share this resource with your local hospice and palliative care programs and let them know that LGBTQ-inclusive care is important to you.  

To find a palliative care program in your community, go to https://getpalliativecare.org/  

To find a hospice program in your community, go to https://www.nhpco.org/find-hospice

How can our website visitors learn more about this book?

You can learn more about the book at http://www.lgbtq-inclusive.com/. The book is available for purchase at http://harringtonparkpress.com/lgbtq-inclusive-hospice-palliative-care/.

© 2011-2017 Services and Advocacy for GLBT Elders. All rights reserved. For permission to reprint these articles, or post them online, please e-mail us.

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