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The Handbook of LGBTQIA-Inclusive Hospice and Palliative Care

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Kimberly D. Acquaviva provides an expert guide for hospice and palliative care professionals, addressing LGBTQIA+ inclusion in end-of-life care.

Image courtesy of interviewee. December 22, 2023

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This video video is a transcript of a talk by a queer individual reflecting on their experiences in healthcare, particularly regarding LGBTQ inclusion and the creation of inclusive care environments in hospice and palliative care settings. They narrate their personal journey as a lifelong member of the LGBTQ community, their experiences in healthcare professionals' attitudes toward LGBTQ individuals, particularly in hospice care, and the challenges faced in accessing appropriate healthcare services for their partner, who ultimately passed away without the desired inclusive hospice care.

Key points include:
1. The speaker emphasizes the importance of creating a healthcare experience that respects and includes LGBTQ individuals without requiring them to disclose their identity if they choose not to.
2. They discuss the misunderstanding among healthcare professionals who think treating everyone the same suffices, while neglecting the nuances of diverse identities.
3. The speaker shares the need for practical resources and training for healthcare providers, aiming to make inclusive approaches standard practice rather than an afterthought.
4. They introduce a mnemonic device, "CAMPERS," outlining practical steps for healthcare providers to approach patient interactions with clear purposes, awareness of their biases, emotional readiness, and the strategies necessary for inclusive care.
5. They underline the necessity for LGBTQ individuals to demand inclusive care and for allies to advocate for change in healthcare systems, emphasizing that market forces can drive institutions to become more inclusive.

Overall, the text details the significant gap in inclusive healthcare for LGBTQ individuals and proposes pathways to address these challenges through education, advocacy, and systemic change in healthcare practices.

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Here are some articles and resources that address themes similar to the video you , focusing on LGBTQ inclusion in healthcare, particularly in hospice and palliative care settings:

1. **"LGBTQ+ Cultural Competency in Healthcare"**
This article discusses the importance of LGBTQ cultural competency among healthcare professionals and provides insights into training programs that aim to improve understanding of the unique needs of LGBTQ patients.

2. **"Barriers to Healthcare Access for the LGBTQ Community"**
This resource outlines various barriers that LGBTQ individuals face in accessing healthcare services, including discrimination, stigma, and lack of provider knowledge. It offers suggestions for overcoming these obstacles.

3. **"Creating Inclusive Care Environments for LGBTQ Patients"**
A detailed guide on how healthcare facilities can create more welcoming and inclusive environments for LGBTQ patients. This includes policy recommendations, staff training, and patient engagement strategies.

4. **"The Importance of Diversity in End-of-Life Care"**
This article emphasizes the necessity for palliative and hospice care settings to consider the diverse identities of patients, including LGBTQ status, and discusses practices for delivering person-centered care.

5. **"Advocating for LGBTQ-Friendly Policies in Healthcare"**
An advocacy-focused piece detailing how individuals and organizations can push for policy changes that lead to better care for LGBTQ individuals within healthcare systems, highlighting successful campaigns and initiatives.

6. **"CAMPERS: A Framework for Addressing LGBTQ Health Needs"**
An article that elaborates on the mnemonic "CAMPERS" mentioned in your video, providing concrete examples of how healthcare providers can implement these practices in their interactions with LGBTQ patients.

7. **"Intersectionality in Healthcare: Addressing the Needs of LGBTQ Patients"**
This resource dives into how intersecting identities affect healthcare experiences and outcomes for LGBTQ individuals, stressing the importance of tailored approaches in medical treatment.

8. **"Training Healthcare Workers on LGBTQ Issues: A Necessity"**
Focused on the need for comprehensive training programs that equip healthcare workers with the knowledge and skills needed to provide inclusive care to LGBTQ patients.

These articles provide various perspectives and strategies for improving LGBTQ inclusion in healthcare and address the critical issues highlighted in your video related to education, advocacy, and systemic change.

X-TIMESTAMP-MAP:LOCAL=00:00:00.000,MPEGTS=900000

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As someone who has identified as, as queer

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and as a member of the L-G-B-T-Q community

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for pretty much my entire life, I knew

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that there would come a time when I might need healthcare

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and that I would want it to be able to be inclusive.

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I was, doing work in hospice

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and palliative care in my twenties

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and really notice that there were a lot

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of healthcare professionals working

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in hospice in particular.

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'cause that's where I was working at the time, who wanted

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to do a good job but didn't understand,

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or might have,

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really strong religious beliefs about

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topics like homosexuality.

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And those beliefs could end up interfering

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with their ability to provide great care.

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So I started thinking about

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how can we help healthcare professionals understand how

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to provide inclusive care without changing their religious

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beliefs or feeling like they had to.

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Um, and so originally, I, I wrote the book.

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Um, so I wrote my first book in 2017,

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and then wrote this book, in 2023.

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And the, the thinking behind both of them was,

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I wanna create a world where care is better,

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for L-G-B-T-Q-I-A people,

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and also where healthcare professionals have access

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to the information they need to do a better job.

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Because I, I've had two books,

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and my first book was in 2017

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and, really laid out the foundation, some

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of the core aspects of my new book.

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So thinking about, the structure of how to,

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what do I need to teach people how

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to do and how to do it well.

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And so when I described the research process,

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it really is the process that I've used for both my books.

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Um, I started by thinking about what's out there already.

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So what do hospice and palliative care professionals

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already have access to?

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And there are lots of really fantastic, heavily academic

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and heavy, tomes that have come out from like,

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like the Oxford Guides,

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and there'll be a large, large book filled

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with academic chapters,

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which are fascinating while researched,

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but are hard for the average healthcare professional

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to just pick up and use.

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So I thought, okay, I wanna design something

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that anyone can pick up, anyone who's working in hospice

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and palliative care, and

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that it will tell them practical suggestions.

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So the first thought was, do research on what's out there,

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figure out how to make something that is more practical.

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Um, the second thing that I thought about was,

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what is the approach that everyone else has taken

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around inclusion because it doesn't seem to be working so

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that I can then take the opposite approach.

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So I looked at all the books that were out there and,

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and pretty much everything in hospice

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and palliative care, there's a standalone chapter about

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L-G-B-T-Q people

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or, they are mentioned in a chapter on

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special populations.

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And what I wanted to do was write a book

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that would teach people how to provide hospice

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and palliative care that's high quality to anyone.

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And if they provided this care in a way

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that was high quality

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and in the way that I described it, it would be inclusive

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of L-G-B-T-Q-I-A people in the process.

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Um, so that people would stop thinking about L-G-B-T-Q-I-A

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individuals as folks that they need

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to treat different when they know somebody is gay

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or they know they're they are trans,

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and instead, treat everyone

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with this inclusive approach.

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And that way no one has to come out,

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if they don't want to.

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Uh, everyone should be able to be treated with respect

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and dignity,

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and in ways that are affirming

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of them without having the onus beyond them

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to tell providers, Hey, you should treat me in ways

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that are respectful because I am L-G-B-T-Q-I-A.

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So I think the reason why it gets omitted

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or put in a standalone chapter is that for many people

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who are cisgender

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and heterosexual, healthcare professionals think

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I treat everyone the same.

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Why would I need to? Why would I need

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to provide special care to a group of people

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or everybody dies the same?

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How is this relevant? And so I think it's gotten forgotten

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by a lot of people because they don't really,

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if they're not a member of the community,

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they don't understand what it's like to go through life

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interacting with healthcare professionals,

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and feeling that vulnerability of being different.

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So I think that that is one reason.

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I think the other reason is it is very hard to,

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especially when you're working with a very diverse group

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of healthcare professionals across all different

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disciplines, it's difficult to tell people, Hey, you need

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to take care of this population

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and treat them well without also addressing the religious

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issue that ends up being such a heavy

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thing in the United States.

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We have a, you know,

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o unfortunately over the last several years,

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an increasing wave of anti-trans gender

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and ant anti L-G-B-T-Q-I-A legislation nationally.

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Um, and so it's hard for people

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to broach these topics given the tense

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political climate we have.

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Um, and so with the approach that I take in my book

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and also in the work that I do, is that I'm very explicit

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with people that you don't have

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to change your religious beliefs to provide exceptional care

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to L-G-B-T-Q-I-A people.

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I was raised in the south, I work in the south,

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and I work with a wide spectrum of healthcare professionals,

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across the political spectrum,

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across the religious spectrum.

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And at the end of the day,

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it does not matter if someone's religious beliefs

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or political beliefs, are strong around the issue

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of homosexuality because their scope of practice

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as healthcare professionals does not have anything to do

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with the destination of a person's soul after they die.

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And so worrying about any of those, the religious issues, is

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beyond their scope of practice.

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And so what they have to do is focus on providing

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exceptional care to people while they're here

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on planet Earth.

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And that's the focus.

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So that's what I tell folks

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and I, when I speak to groups, I I say, it is okay,

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if you think that I as a queer person am going to hell,

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a hundred percent okay, if you're providing care for me,

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I don't wanna know that you believe

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that I should never know that you believe that.

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Um, you should never indicate that you believe that.

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And I should be able to leave the interaction

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with you feeling like you value me as a human,

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that you're treating me, treating me,

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with the same dignity and

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respect you would treat other people.

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And that's really the goal.

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It's important to recognize that the rich diversity

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that people bring to any care interaction

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that is part of who they are.

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And so, it is, it is easy for people to say,

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I'll treat everyone the same, but

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that actually isn't helpful.

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Um, when after I wrote my first book, an unfortunate,

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it sounds like such a weird thing to say, coincidence,

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but I, I don't know any other way

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to say it other than just terrible luck.

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Two years after writing my first book, my wife

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of almost 20 years was diagnosed with ovarian cancer

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and it was very, very advanced.

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And, she only lived

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for six months from the time of diagnosis.

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She was a hospice and palliative care leader.

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Um, we had been doing hospice

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and palliative care work forever.

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And when it came time for us to be able to have care

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for her, we were able

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to find palliative care that was inclusive.

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But we had just moved to Virginia, which is in the south.

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Um, and there was no hospice here

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that had an L-G-B-T-Q inclusive

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non-discrimination statement.

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And so ultimately we were not able

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to access hospice services for my wife.

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She did die at home without hospice, with myself

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and our son taking care of her.

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And, you know, it's, it's a terrible thing to think this,

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but you know, we knew all of the people.

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We knew a lot of the people in the field because my wife

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and I were both pretty well known in the field.

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And so, I had written a blog post about how we weren't,

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weren't gonna be accepting hospice

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because there was lack of,

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inclusive hospices in our area.

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And a local hospice leader who we knew reached out to us

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and said, please, please, please,

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we wanna be there for your family.

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They'd known us forever, professionally.

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And, I was really clear this was about two weeks

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before Kathy died, that we,

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we could not accept care from a hospice

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that didn't have an inclusive non-discrimination statement.

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And they wrote back

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and they said, you know, they were very upset.

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Um, and, but understandably so.

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And they said, please, we treat,

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I've always treated everyone as one of God's children.

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And immediately I was like, okay, yeah.

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So this is part of the problem.

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We'll have to carry on this conversation later.

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We've since continued those conversations

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after my wife died.

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Um, and all of the local hospices do now have,

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inclusive non-discrimination statements.

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But I had to help that medical director understand that

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that reassurance I treat everyone like one

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of God's children, was actually terrifying to my wife

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and I, because it, it set up some red flags, which is

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that they're using a religious lens for how they see,

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patients.

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And so treating everyone the same

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or treating everyone as one of God's children,

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doesn't really acknowledge the nuances of the experience

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of an L-G-B-T-Q-I-A person in America.

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So when care is inclusive, it means that any person

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who is L-G-B-T-Q-I-A can interact,

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let's say we're speaking specifically about hospice

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and palliative care, that I, as a queer person

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or a colleague

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Or friend of mine who is a trans person, should be able

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to access hospice

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and palliative care knowing that, the intake forms

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and processes, use terms

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and words that are inclusive of their lived experience.

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So not, distilling the idea of sex down

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to a male female checkbox,

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but recognizing what sex with someone assigned at birth,

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what gender do they identify as now,

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giving people opportunities to share the name

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that they prefer to be called, the pronouns they use.

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And also being asked questions about who are the people

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that they consider to be family, who, what is important

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to that person in terms of making sure

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that their wishes are honored throughout their illness,

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and the rest of their life.

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And so when it's done inclusively, everybody who interacts

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with a hospice or palliative care, program would have

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that experience from day one.

09:46.165 --> 09:48.405
Even if someone is a cisgender, heterosexual person,

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they are also being asked, what name do you wanna be called?

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What are your pronouns?

09:53.065 --> 09:56.405
Um, there aren't special forms for the L-G-B-T-Q-I-A folks.

09:56.635 --> 09:58.525
It's everybody's having that same process.

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And inclusion really means making it inclusive for everyone,

10:02.625 --> 10:05.725
as opposed to if you, disclose to us

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that you are L-G-B-T-Q-I-A, then we'll give you,

10:08.515 --> 10:10.325
then we'll ask you questions about pronouns,

10:10.325 --> 10:12.085
then we'll ask you questions about your name.

10:12.465 --> 10:15.245
Um, inclusion means we're gonna treat everyone with

10:15.245 --> 10:16.565
that same best practice.

10:17.105 --> 10:20.285
And it also is, I think, a way of acknowledging

10:20.285 --> 10:23.285
that across generations people have different levels

10:23.345 --> 10:25.085
of comfort about what they are

10:25.085 --> 10:27.765
and are not gonna share with a healthcare professional,

10:27.765 --> 10:29.525
particularly ones that are coming to their home.

10:29.945 --> 10:33.605
And so, for, there are some older couples

10:34.025 --> 10:35.205
who are in their eighties

10:35.205 --> 10:38.765
and nineties who still identify as roommates if the care is

10:38.965 --> 10:41.765
provided in ways that are truly L-G-B-T-Q-I-A inclusive,

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those two individuals that I identify publicly as roommates

10:46.135 --> 10:48.885
would be treated with the dignity and respect they deserve.

10:49.305 --> 10:51.725
And their relationship would be honored in the way that,

10:51.755 --> 10:53.885
that the patient and family wanted it honored.

10:54.185 --> 10:57.245
So when questions are asked about who do you wanna make,

10:57.505 --> 10:59.965
who do you want to have making decisions for yourself?

10:59.985 --> 11:01.925
Should there come a time that you're unable to make them,

11:02.235 --> 11:03.645
that person would be able to say,

11:03.865 --> 11:06.045
my roommate Bob, that's who I want.

11:06.265 --> 11:09.805
And so then it doesn't matter what label they use to refer

11:09.805 --> 11:12.085
to their partner, what matters is

11:12.085 --> 11:15.045
that the relationship is honored, respected,

11:15.065 --> 11:17.445
and that people feel safe being who they are.

11:18.275 --> 11:20.915
I came up with a num mnemonic campers, two reasons.

11:21.415 --> 11:23.475
One, I think mnemonics are really, really helpful

11:23.505 --> 11:24.675
with healthcare professionals.

11:25.015 --> 11:27.155
And two, I do a lot with scouting,

11:27.185 --> 11:28.355
with Boy Scouts of America.

11:28.535 --> 11:30.195
And so I do a lot of adult training.

11:30.215 --> 11:32.475
And so at, at the time I was doing a lot of camping

11:32.695 --> 11:34.515
and I was thinking about when you camp,

11:34.735 --> 11:36.955
you really need a very, very clear sense

11:36.955 --> 11:38.155
of exactly what you're gonna be doing.

11:38.255 --> 11:39.555
You need to pack the right gear.

11:39.975 --> 11:42.235
You don't wanna go on a three day camping trip

11:42.235 --> 11:45.075
with just a toothbrush and like a, a kit katt bar.

11:45.135 --> 11:46.235
You need to actually plan.

11:46.615 --> 11:48.355
And then after the trip, you need to think about

11:48.355 --> 11:49.715
what can I do better differently?

11:50.135 --> 11:51.835
So I came up with campers as a way

11:51.935 --> 11:55.565
for healthcare professionals to enter every interaction,

11:55.835 --> 11:57.805
with this sense of clarity.

11:58.065 --> 11:59.845
And so the C is clear purpose.

12:00.185 --> 12:02.205
So before you interact with any patient,

12:02.535 --> 12:04.005
healthcare professional needs

12:04.025 --> 12:06.565
to think about what's the purpose of this interaction?

12:06.565 --> 12:08.085
What's my purpose going into this?

12:08.545 --> 12:09.925
If I know that I,

12:09.925 --> 12:13.325
as a hospice palliative care professional am going to be,

12:13.625 --> 12:14.885
meeting with a patient

12:14.945 --> 12:16.725
and a family for the very first time

12:17.225 --> 12:19.365
to discuss admission into a hospice

12:19.465 --> 12:22.565
or palliative care program, then my clear purpose may be

12:22.565 --> 12:25.485
explaining the program, getting informed consent,

12:25.665 --> 12:28.405
making sure they understand the program, also understanding

12:28.405 --> 12:31.325
what their goals and priorities are for care,

12:31.325 --> 12:34.005
understanding, what their goals

12:34.025 --> 12:36.405
and priorities are in terms of decision making, long-term.

12:36.865 --> 12:39.525
And perhaps one of the other clear purposes would be,

12:39.715 --> 12:40.765
assessing whether

12:40.765 --> 12:42.365
or not they've done advanced care planning.

12:42.545 --> 12:43.845
So do they have a healthcare surrogate

12:43.845 --> 12:45.045
power of attorney living well?

12:45.505 --> 12:47.645
Um, and finally, building rapport.

12:48.855 --> 12:51.315
The A of campers is for attitudes and beliefs.

12:51.535 --> 12:53.595
So really having some awareness

12:53.895 --> 12:55.595
before you go into an interaction.

12:55.985 --> 12:57.275
What are some of the attitudes

12:57.275 --> 12:59.475
and beliefs that I have as a healthcare professional

12:59.475 --> 13:01.115
that could impact that interaction?

13:01.575 --> 13:03.915
So for example, if I am going to be making a home visit

13:04.015 --> 13:08.075
and I'm going to, do a home visit for a hospice patient,

13:08.615 --> 13:11.675
and I look at the address on the admission form,

13:12.455 --> 13:14.995
do I make judgements based on what that address is?

13:15.375 --> 13:19.155
Um, do I, am I aware of what my own thoughts are?

13:19.615 --> 13:21.475
Um, did I have a bad experience

13:21.475 --> 13:22.555
in that, in that neighborhood?

13:22.655 --> 13:25.435
Did I, do I have family who live in that neighborhood?

13:25.545 --> 13:28.075
Your attitude or belief could be positive or negative.

13:28.075 --> 13:30.875
It's not always negative. Um, sometimes it's assumptions

13:30.905 --> 13:35.315
that, may be, I see that this person lives alone.

13:35.495 --> 13:37.115
Do I go into it assuming

13:37.305 --> 13:39.275
that care is gonna be a lot more complicated.

13:39.695 --> 13:43.235
Um, and also if I see that, let's say

13:43.235 --> 13:47.555
that someone self-identifies on the admission form as,

13:48.155 --> 13:50.635
a member of a, a faith tradition, maybe one

13:50.635 --> 13:53.115
that I'm unfamiliar with, what's my attitude and belief?

13:53.235 --> 13:56.875
I need to think about what's my gut reaction,

13:56.935 --> 13:58.115
and be honest with myself

13:58.295 --> 13:59.995
and then develop a mitigation plan.

14:00.455 --> 14:03.795
So really figure out what am I going to do in

14:03.795 --> 14:06.315
that interaction to make sure that any attitudes

14:06.315 --> 14:09.195
and beliefs that I have have no impact on that care.

14:09.775 --> 14:11.355
So if I, my attitude

14:11.355 --> 14:14.275
and belief, let's say that I had seen that a patient,

14:14.305 --> 14:16.435
that I was about to meet is trans,

14:17.205 --> 14:19.195
maybe my attitude and belief.

14:19.195 --> 14:22.835
If I'm unfamiliar with working with trans folks, maybe my

14:23.515 --> 14:25.595
attitude is I don't understand.

14:25.925 --> 14:29.475
Maybe, maybe my attitude is even, I think it's wrong,

14:29.535 --> 14:31.395
or I think it's a mental illness.

14:31.675 --> 14:33.395
I like, those are not my beliefs,

14:33.455 --> 14:35.035
but I'm imagining the kinds

14:35.035 --> 14:36.555
of things a healthcare professional might think.

14:37.135 --> 14:39.595
So the mitigation plan is what am I gonna do to make sure

14:39.835 --> 14:43.155
that those attitudes and beliefs do not show to the patient,

14:43.575 --> 14:44.835
but also that I'm honest

14:44.865 --> 14:47.155
with myself about holding myself accountable

14:47.215 --> 14:49.075
to preventing those beliefs from

14:49.075 --> 14:50.395
impacting the care I provide.

14:51.025 --> 14:52.445
So it is incredibly important

14:53.025 --> 14:56.285
for all healthcare professionals to have a trusted person,

14:56.285 --> 14:58.565
either a supervisor, ideally a supervisor,

14:58.905 --> 15:02.005
but it could be a peer where you're able to say, I'm,

15:02.265 --> 15:03.685
I'm struggling as I'm thinking

15:03.685 --> 15:04.805
about going to this interaction.

15:05.145 --> 15:08.485
Um, and I need to really, I need to hold myself accountable.

15:08.685 --> 15:10.285
I need to check myself,

15:10.305 --> 15:13.405
and make sure that I don't let any of my attitudes show.

15:13.825 --> 15:17.125
And also that I continually remain open

15:17.145 --> 15:18.805
to changing my attitudes

15:18.805 --> 15:21.085
and beliefs based on interactions with patients.

15:21.945 --> 15:25.285
Um, the p in campers is for patient, knowing the patient.

15:26.105 --> 15:29.445
So every patient is a population of one.

15:29.905 --> 15:33.325
Um, about 10 to 15 years ago, there was a lot of diversity,

15:33.585 --> 15:36.645
equity and inclusion educational materials.

15:36.645 --> 15:39.205
It was like, if you work with this pop population, prepare

15:39.205 --> 15:41.765
for this, L-G-B-T-Q-I-A.

15:41.765 --> 15:43.685
People have often been disowned by their families

15:43.685 --> 15:45.365
and had a bad experience with religion.

15:45.795 --> 15:48.765
Unfortunately, those kind of generalizations are not helpful

15:49.075 --> 15:50.325
because they teach people

15:50.345 --> 15:52.325
to go into an interaction expecting

15:52.635 --> 15:54.605
that someone is just one person

15:54.665 --> 15:56.725
of this bigger population that looks the same.

15:57.265 --> 16:01.805
Um, the L-G-B-T-Q-I-A population is really many populations

16:02.175 --> 16:05.525
where you have intersections of race and disability

16:05.785 --> 16:08.445
and religion and all kinds of things.

16:09.025 --> 16:11.125
And so getting to know the patient

16:11.705 --> 16:13.325
is the most important part.

16:13.745 --> 16:17.405
As we think about making sure the interaction is a positive

16:17.405 --> 16:19.005
one, your goal should be figuring

16:19.005 --> 16:20.045
out what does the patient want?

16:20.305 --> 16:21.845
Who are they? What do they value?

16:22.345 --> 16:24.525
Um, what do they care about? What are they afraid of?

16:24.945 --> 16:28.485
And really get to know them. Um, emotions.

16:28.505 --> 16:31.005
The e in campers emotions is being aware

16:31.005 --> 16:33.365
of your own emotions in that interaction,

16:33.555 --> 16:36.605
with the patient may sometimes there are patients

16:36.605 --> 16:38.725
that you feel extraordinarily drawn to

16:38.725 --> 16:40.245
and you wanna spend tons of time with them

16:40.435 --> 16:43.605
because they're so lovely and so friendly and so amazing.

16:44.185 --> 16:46.965
And other times healthcare professionals will say,

16:47.145 --> 16:48.805
I'm really struggling with this patient.

16:49.005 --> 16:50.325
I know it's gonna take a lot of time.

16:50.425 --> 16:53.285
Or it's stressful being attuned

16:53.285 --> 16:55.085
to your own emotions and reactions.

16:55.465 --> 16:58.805
Um, and this loops back to when we think about, you know,

16:58.815 --> 17:01.165
every interaction, looping back to attitudes

17:01.165 --> 17:03.285
and beliefs as you go into the next interaction.

17:03.745 --> 17:06.525
Do you go in expecting this visit's gonna take a long time

17:06.905 --> 17:08.525
or this visit's gonna be complex?

17:08.705 --> 17:11.205
And so emotions is really being aware

17:11.205 --> 17:13.605
of your own emotions throughout the interaction

17:13.605 --> 17:15.565
and also how it shapes how you see that patient.

17:16.065 --> 17:18.885
Um, because it's important that we don't avoid spending time

17:18.885 --> 17:22.325
with patients and families who take more time or energy.

17:22.825 --> 17:24.605
Um, it's natural for people

17:24.605 --> 17:26.165
to wanna spend more time on the things

17:26.165 --> 17:27.205
that they enjoy doing.

17:27.585 --> 17:29.725
Um, and there may be some patient encounters

17:29.725 --> 17:32.405
that are harder, but it's really important that we continue

17:32.405 --> 17:33.925
to lean into those because those patients

17:33.925 --> 17:36.685
and families need our, our care as much as anybody else.

17:37.385 --> 17:41.325
Um, reactions is being aware of your own, the way

17:41.325 --> 17:43.845
that you're reacting with a patient, both

17:43.845 --> 17:45.965
during the interaction and, and also afterwards.

17:46.145 --> 17:48.285
And being aware of things like nonverbals.

17:48.705 --> 17:50.605
So non-verbal expressions.

17:51.115 --> 17:52.525
It's fascinating to me

17:52.625 --> 17:54.885
to watch when people think they're being non-judgmental,

17:55.225 --> 17:56.645
but their eyebrows go up.

17:56.835 --> 17:59.085
They make these giant, like if you,

17:59.745 --> 18:02.325
see I've had the opportunity to see lots of,

18:02.505 --> 18:05.925
med students over the years do take sexual histories as part

18:05.925 --> 18:08.965
of the process of learning how to take a sexual history.

18:09.385 --> 18:11.205
And they think that they're being so non-judgmental,

18:11.225 --> 18:13.725
and then they're like, eyebrows go up and they look shocked.

18:14.105 --> 18:16.165
And so we have to be aware of what our reactions are.

18:16.165 --> 18:17.325
What's our body language?

18:17.385 --> 18:20.565
If someone tells us that they are gay, do we all

18:20.565 --> 18:23.645
of a sudden like close off or do we push our chair back?

18:23.785 --> 18:26.405
Do we do things that make it clear that we're uncomfortable?

18:26.865 --> 18:30.765
Um, and how much control do we have over making sure

18:30.765 --> 18:34.405
that those reactions are projecting what we want to project

18:34.405 --> 18:35.445
to patients and families?

18:35.625 --> 18:36.725
We have a lot of control,

18:37.065 --> 18:39.765
but it requires a lot of awareness and practice.

18:40.305 --> 18:42.765
And then strategy is what are you gonna do moving forward?

18:42.905 --> 18:45.885
What's your plan to continue to provide exceptional care

18:45.885 --> 18:48.085
to this patient and family, do a great job

18:48.225 --> 18:49.965
and not let your attitudes, beliefs,

18:49.985 --> 18:52.445
or emotions end up interfering with your ability

18:52.465 --> 18:53.565
to provide inclusive care?

18:54.115 --> 18:56.125
Even though it sounds like lots of steps,

18:56.145 --> 18:57.925
and it took me forever to explain all of them,

18:58.145 --> 19:00.445
it actually does not take long to put in practice at all.

19:00.705 --> 19:03.445
Um, and it's something that when you do it over

19:03.445 --> 19:05.365
and over again, you get to the point

19:05.365 --> 19:07.085
where it is almost automatic.

19:07.465 --> 19:10.325
Um, being aware of each step as you go along the way.

19:10.605 --> 19:12.405
I think that the key, there are two keys

19:12.625 --> 19:14.685
to developing more inclusive institutions.

19:15.505 --> 19:19.325
One is for L-G-B-T-Q-I-A people and their allies

19:19.745 --> 19:23.885
and their families to demand that care be inclusive.

19:24.505 --> 19:27.685
So one great way that allies can help advocate

19:27.685 --> 19:31.245
for this is when any person, cisgender, heterosexual,

19:31.315 --> 19:33.685
does not matter if they're part of the community,

19:34.085 --> 19:36.805
interacts with any healthcare professional, hospital,

19:36.815 --> 19:37.845
healthcare system.

19:38.345 --> 19:40.205
If they see that the intake forms

19:40.465 --> 19:42.205
or the admission forms aren't inclusive,

19:42.665 --> 19:45.605
if they ask one question about sex and there's just male

19:45.605 --> 19:48.445
and female or there's no opportunity to share pronouns,

19:48.755 --> 19:51.725
it's an opportunity for allies to say, Hey, you know what?

19:51.725 --> 19:53.565
I noticed that your form is pretty outdated.

19:54.145 --> 19:56.285
Um, are you open to updating it?

19:56.585 --> 19:58.965
And so the more people who do that, the more

19:58.965 --> 20:01.325
that institutions will make some of those, i,

20:01.405 --> 20:02.805
I don't wanna say simpler changes

20:03.125 --> 20:04.445
'cause they can be logistically hard,

20:04.745 --> 20:08.325
but they don't require a huge amount of human energy,

20:08.465 --> 20:09.525
in terms of getting training.

20:09.585 --> 20:10.925
So that's kind of the first step.

20:11.545 --> 20:13.205
The second step is for,

20:13.445 --> 20:16.845
L-G-B-T-Q-I-A individuals themselves to refuse

20:16.845 --> 20:17.845
to accept care

20:18.065 --> 20:21.365
unless it is inclusive, when they have the ability to do so.

20:21.865 --> 20:23.805
So we don't always have that luxury.

20:24.225 --> 20:27.525
Uh, for my family, we came here, there was no other hospice.

20:27.705 --> 20:31.085
So for us, we went without care. That is not a great option.

20:31.305 --> 20:33.405
Um, and because I've worked in hospice

20:33.465 --> 20:36.605
and palliative care, I felt comfortable providing the care

20:36.705 --> 20:38.965
for my wife, but I'm a social worker,

20:39.155 --> 20:42.005
like I am not qualified to be providing bedside care

20:42.005 --> 20:45.005
to anybody when it, when it's clinical care.

20:45.465 --> 20:46.845
So if there is the

20:46.925 --> 20:48.525
Ability for someone to choose

20:48.525 --> 20:51.085
between healthcare professionals, whether it is choosing

20:51.085 --> 20:53.205
between hospices or palliative care programs

20:53.225 --> 20:57.125
or local clinics, if people choose programs

20:57.125 --> 20:59.325
that are inclusive, have inclusive non-discrimination

20:59.325 --> 21:00.885
statements and have staff

21:00.885 --> 21:02.925
that have been trained on inclusion,

21:03.455 --> 21:05.485
other programs will start realizing

21:05.485 --> 21:09.005
that the market differentiator out there,

21:09.515 --> 21:10.525
becomes inclusion.

21:11.185 --> 21:13.445
And unfortunately in the United States,

21:13.465 --> 21:16.085
our healthcare systems are really largely driven by money.

21:16.425 --> 21:19.245
And so if people do not go seek out care, that is,

21:19.245 --> 21:22.285
if people stop going to providers that are not inclusive,

21:22.625 --> 21:24.805
people will realize that they need

21:24.805 --> 21:27.085
to actually become inclusive to be able to meet the needs

21:27.085 --> 21:27.965
of the market they serve.

00:00 - As someone who has identified as, as queer and as a member of the L-G-B-T-Q community for pretty much my entire life, I knew that there would come a time when I might need healthcare and that I would want it to be able to be inclusive. I was, doing work in hospice

00:15 - and palliative care in my twenties and really notice that there were a lot of healthcare professionals working in hospice in particular. 'cause that's where I was working at the time, who wanted to do a good job but didn't understand, or might have, really strong religious beliefs about topics like homosexuality. And those beliefs could end up interfering

00:36 - with their ability to provide great care. So I started thinking about how can we help healthcare professionals understand how to provide inclusive care without changing their religious beliefs or feeling like they had to. and so originally, I, I wrote the book. so I wrote my first book in 2017, and then wrote this book, in 2023. And the, the thinking behind both of them was, I wanna create a world where care is better,

01:02 - for L-G-B-T-Q-I-A people, and also where healthcare professionals have access to the information they need to do a better job. Because I, I've had two books, and my first book was in 2017 and, really laid out the foundation, some of the core aspects of my new book. So thinking about, the structure of how to, what do I need to teach people how to do and how to do it well.

01:25 - And so when I described the research process, it really is the process that I've used for both my books. I started by thinking about what's out there already. So what do hospice and palliative care professionals already have access to? And there are lots of really fantastic, heavily academic and heavy, tomes that have come out from like, like the Oxford Guides, and there'll be a large, large book filled with academic chapters,

01:50 - which are fascinating while researched, but are hard for the average healthcare professional to just pick up and use. So I thought, okay, I wanna design something that anyone can pick up, anyone who's working in hospice and palliative care, and that it will tell them practical suggestions. So the first thought was, do research on what's out there, figure out how to make something that is more practical. the second thing that I thought about was,

02:14 - what is the approach that everyone else has taken around inclusion because it doesn't seem to be working so that I can then take the opposite approach. So I looked at all the books that were out there and, and pretty much everything in hospice and palliative care, there's a standalone chapter about L-G-B-T-Q people or, they are mentioned in a chapter on special populations. And what I wanted to do was write a book

02:37 - that would teach people how to provide hospice and palliative care that's high quality to anyone. And if they provided this care in a way that was high quality and in the way that I described it, it would be inclusive of L-G-B-T-Q-I-A people in the process. so that people would stop thinking about L-G-B-T-Q-I-A individuals as folks that they need to treat different when they know somebody is gay or they know they're they are trans,

03:02 - and instead, treat everyone with this inclusive approach. And that way no one has to come out, if they don't want to. everyone should be able to be treated with respect and dignity, and in ways that are affirming of them without having the onus beyond them to tell providers, Hey, you should treat me in ways that are respectful because I am L-G-B-T-Q-I-A.

03:24 - So I think the reason why it gets omitted or put in a standalone chapter is that for many people who are cisgender and heterosexual, healthcare professionals think I treat everyone the same. Why would I need to? Why would I need to provide special care to a group of people or everybody dies the same? How is this relevant? And so I think it's gotten forgotten by a lot of people because they don't really,

03:47 - if they're not a member of the community, they don't understand what it's like to go through life interacting with healthcare professionals, and feeling that vulnerability of being different. So I think that that is one reason. I think the other reason is it is very hard to, especially when you're working with a very diverse group of healthcare professionals across all different disciplines, it's difficult to tell people, Hey, you need to take care of this population

04:11 - and treat them well without also addressing the religious issue that ends up being such a heavy thing in the United States. We have a, you know, o unfortunately over the last several years, an increasing wave of anti-trans gender and ant anti L-G-B-T-Q-I-A legislation nationally. and so it's hard for people to broach these topics given the tense political climate we have.

04:35 - and so with the approach that I take in my book and also in the work that I do, is that I'm very explicit with people that you don't have to change your religious beliefs to provide exceptional care to L-G-B-T-Q-I-A people. I was raised in the south, I work in the south, and I work with a wide spectrum of healthcare professionals, across the political spectrum, across the religious spectrum. And at the end of the day,

04:59 - it does not matter if someone's religious beliefs or political beliefs, are strong around the issue of homosexuality because their scope of practice as healthcare professionals does not have anything to do with the destination of a person's soul after they die. And so worrying about any of those, the religious issues, is beyond their scope of practice. And so what they have to do is focus on providing exceptional care to people while they're here on planet Earth.

05:25 - And that's the focus. So that's what I tell folks and I, when I speak to groups, I I say, it is okay, if you think that I as a queer person am going to hell, a hundred percent okay, if you're providing care for me, I don't wanna know that you believe that I should never know that you believe that. you should never indicate that you believe that. And I should be able to leave the interaction with you feeling like you value me as a human,

05:51 - that you're treating me, treating me, with the same dignity and respect you would treat other people. And that's really the goal. It's important to recognize that the rich diversity that people bring to any care interaction that is part of who they are. And so, it is, it is easy for people to say, I'll treat everyone the same, but that actually isn't helpful.

06:12 - when after I wrote my first book, an unfortunate, it sounds like such a weird thing to say, coincidence, but I, I don't know any other way to say it other than just terrible luck. Two years after writing my first book, my wife of almost 20 years was diagnosed with ovarian cancer and it was very, very advanced. And, she only lived for six months from the time of diagnosis. She was a hospice and palliative care leader.

06:38 - we had been doing hospice and palliative care work forever. And when it came time for us to be able to have care for her, we were able to find palliative care that was inclusive. But we had just moved to Virginia, which is in the south. and there was no hospice here that had an L-G-B-T-Q inclusive non-discrimination statement. And so ultimately we were not able

06:59 - to access hospice services for my wife. She did die at home without hospice, with myself and our son taking care of her. And, you know, it's, it's a terrible thing to think this, but you know, we knew all of the people. We knew a lot of the people in the field because my wife and I were both pretty well known in the field. And so, I had written a blog post about how we weren't, weren't gonna be accepting hospice because there was lack of,

07:24 - inclusive hospices in our area. And a local hospice leader who we knew reached out to us and said, please, please, please, we wanna be there for your family. They'd known us forever, professionally. And, I was really clear this was about two weeks before Kathy died, that we, we could not accept care from a hospice that didn't have an inclusive non-discrimination statement. And they wrote back

07:49 - and they said, you know, they were very upset. and, but understandably so. And they said, please, we treat, I've always treated everyone as one of God's children. And immediately I was like, okay, yeah. So this is part of the problem. We'll have to carry on this conversation later. We've since continued those conversations after my wife died. and all of the local hospices do now have,

08:11 - inclusive non-discrimination statements. But I had to help that medical director understand that that reassurance I treat everyone like one of God's children, was actually terrifying to my wife and I, because it, it set up some red flags, which is that they're using a religious lens for how they see, patients. And so treating everyone the same or treating everyone as one of God's children, doesn't really acknowledge the nuances of the experience

08:38 - of an L-G-B-T-Q-I-A person in America. So when care is inclusive, it means that any person who is L-G-B-T-Q-I-A can interact, let's say we're speaking specifically about hospice and palliative care, that I, as a queer person or a colleague Or friend of mine who is a trans person, should be able to access hospice and palliative care knowing that, the intake forms and processes, use terms

09:05 - and words that are inclusive of their lived experience. So not, distilling the idea of sex down to a male female checkbox, but recognizing what sex with someone assigned at birth, what gender do they identify as now, giving people opportunities to share the name that they prefer to be called, the pronouns they use. And also being asked questions about who are the people that they consider to be family, who, what is important to that person in terms of making sure

09:33 - that their wishes are honored throughout their illness, and the rest of their life. And so when it's done inclusively, everybody who interacts with a hospice or palliative care, program would have that experience from day one. Even if someone is a cisgender, heterosexual person, they are also being asked, what name do you wanna be called? What are your pronouns? there aren't special forms for the L-G-B-T-Q-I-A folks. It's everybody's having that same process.

09:59 - And inclusion really means making it inclusive for everyone, as opposed to if you, disclose to us that you are L-G-B-T-Q-I-A, then we'll give you, then we'll ask you questions about pronouns, then we'll ask you questions about your name. inclusion means we're gonna treat everyone with that same best practice. And it also is, I think, a way of acknowledging that across generations people have different levels of comfort about what they are

10:25 - and are not gonna share with a healthcare professional, particularly ones that are coming to their home. And so, for, there are some older couples who are in their eighties and nineties who still identify as roommates if the care is provided in ways that are truly L-G-B-T-Q-I-A inclusive, those two individuals that I identify publicly as roommates would be treated with the dignity and respect they deserve. And their relationship would be honored in the way that, that the patient and family wanted it honored.

10:54 - So when questions are asked about who do you wanna make, who do you want to have making decisions for yourself? Should there come a time that you're unable to make them, that person would be able to say, my roommate Bob, that's who I want. And so then it doesn't matter what label they use to refer to their partner, what matters is that the relationship is honored, respected, and that people feel safe being who they are. I came up with a num mnemonic campers, two reasons.

11:21 - One, I think mnemonics are really, really helpful with healthcare professionals. And two, I do a lot with scouting, with Boy Scouts of America. And so I do a lot of adult training. And so at, at the time I was doing a lot of camping and I was thinking about when you camp, you really need a very, very clear sense of exactly what you're gonna be doing. You need to pack the right gear.

11:39 - You don't wanna go on a three day camping trip with just a toothbrush and like a, a kit katt bar. You need to actually plan. And then after the trip, you need to think about what can I do better differently? So I came up with campers as a way for healthcare professionals to enter every interaction, with this sense of clarity. And so the C is clear purpose. So before you interact with any patient,

12:02 - healthcare professional needs to think about what's the purpose of this interaction? What's my purpose going into this? If I know that I, as a hospice palliative care professional am going to be, meeting with a patient and a family for the very first time to discuss admission into a hospice or palliative care program, then my clear purpose may be explaining the program, getting informed consent,

12:25 - making sure they understand the program, also understanding what their goals and priorities are for care, understanding, what their goals and priorities are in terms of decision making, long-term. And perhaps one of the other clear purposes would be, assessing whether or not they've done advanced care planning. So do they have a healthcare surrogate power of attorney living well? and finally, building rapport.

12:48 - The A of campers is for attitudes and beliefs. So really having some awareness before you go into an interaction. What are some of the attitudes and beliefs that I have as a healthcare professional that could impact that interaction? So for example, if I am going to be making a home visit and I'm going to, do a home visit for a hospice patient, and I look at the address on the admission form, do I make judgements based on what that address is?

13:15 - do I, am I aware of what my own thoughts are? did I have a bad experience in that, in that neighborhood? Did I, do I have family who live in that neighborhood? Your attitude or belief could be positive or negative. It's not always negative. sometimes it's assumptions that, may be, I see that this person lives alone. Do I go into it assuming that care is gonna be a lot more complicated. and also if I see that, let's say

13:43 - that someone self-identifies on the admission form as, a member of a, a faith tradition, maybe one that I'm unfamiliar with, what's my attitude and belief? I need to think about what's my gut reaction, and be honest with myself and then develop a mitigation plan. So really figure out what am I going to do in that interaction to make sure that any attitudes and beliefs that I have have no impact on that care. So if I, my attitude

14:11 - and belief, let's say that I had seen that a patient, that I was about to meet is trans, maybe my attitude and belief. If I'm unfamiliar with working with trans folks, maybe my attitude is I don't understand. Maybe, maybe my attitude is even, I think it's wrong, or I think it's a mental illness. I like, those are not my beliefs, but I'm imagining the kinds of things a healthcare professional might think.

14:37 - So the mitigation plan is what am I gonna do to make sure that those attitudes and beliefs do not show to the patient, but also that I'm honest with myself about holding myself accountable to preventing those beliefs from impacting the care I provide. So it is incredibly important for all healthcare professionals to have a trusted person, either a supervisor, ideally a supervisor, but it could be a peer where you're able to say, I'm,

15:02 - I'm struggling as I'm thinking about going to this interaction. and I need to really, I need to hold myself accountable. I need to check myself, and make sure that I don't let any of my attitudes show. And also that I continually remain open to changing my attitudes and beliefs based on interactions with patients. the p in campers is for patient, knowing the patient. So every patient is a population of one.

15:29 - about 10 to 15 years ago, there was a lot of diversity, equity and inclusion educational materials. It was like, if you work with this pop population, prepare for this, L-G-B-T-Q-I-A. People have often been disowned by their families and had a bad experience with religion. Unfortunately, those kind of generalizations are not helpful because they teach people to go into an interaction expecting that someone is just one person

15:54 - of this bigger population that looks the same. the L-G-B-T-Q-I-A population is really many populations where you have intersections of race and disability and religion and all kinds of things. And so getting to know the patient is the most important part. As we think about making sure the interaction is a positive one, your goal should be figuring out what does the patient want? Who are they? What do they value?

16:22 - what do they care about? What are they afraid of? And really get to know them. emotions. The e in campers emotions is being aware of your own emotions in that interaction, with the patient may sometimes there are patients that you feel extraordinarily drawn to and you wanna spend tons of time with them because they're so lovely and so friendly and so amazing. And other times healthcare professionals will say, I'm really struggling with this patient.

16:49 - I know it's gonna take a lot of time. Or it's stressful being attuned to your own emotions and reactions. and this loops back to when we think about, you know, every interaction, looping back to attitudes and beliefs as you go into the next interaction. Do you go in expecting this visit's gonna take a long time or this visit's gonna be complex? And so emotions is really being aware of your own emotions throughout the interaction

17:13 - and also how it shapes how you see that patient. because it's important that we don't avoid spending time with patients and families who take more time or energy. it's natural for people to wanna spend more time on the things that they enjoy doing. and there may be some patient encounters that are harder, but it's really important that we continue to lean into those because those patients and families need our, our care as much as anybody else.

17:37 - reactions is being aware of your own, the way that you're reacting with a patient, both during the interaction and, and also afterwards. And being aware of things like nonverbals. So non-verbal expressions. It's fascinating to me to watch when people think they're being non-judgmental, but their eyebrows go up. They make these giant, like if you, see I've had the opportunity to see lots of,

18:02 - med students over the years do take sexual histories as part of the process of learning how to take a sexual history. And they think that they're being so non-judgmental, and then they're like, eyebrows go up and they look shocked. And so we have to be aware of what our reactions are. What's our body language? If someone tells us that they are gay, do we all of a sudden like close off or do we push our chair back? Do we do things that make it clear that we're uncomfortable? and how much control do we have over making sure

18:30 - that those reactions are projecting what we want to project to patients and families? We have a lot of control, but it requires a lot of awareness and practice. And then strategy is what are you gonna do moving forward? What's your plan to continue to provide exceptional care to this patient and family, do a great job and not let your attitudes, beliefs, or emotions end up interfering with your ability to provide inclusive care?

18:54 - Even though it sounds like lots of steps, and it took me forever to explain all of them, it actually does not take long to put in practice at all. and it's something that when you do it over and over again, you get to the point where it is almost automatic. being aware of each step as you go along the way. I think that the key, there are two keys to developing more inclusive institutions. One is for L-G-B-T-Q-I-A people and their allies

19:19 - and their families to demand that care be inclusive. So one great way that allies can help advocate for this is when any person, cisgender, heterosexual, does not matter if they're part of the community, interacts with any healthcare professional, hospital, healthcare system. If they see that the intake forms or the admission forms aren't inclusive, if they ask one question about sex and there's just male and female or there's no opportunity to share pronouns,

19:48 - it's an opportunity for allies to say, Hey, you know what? I noticed that your form is pretty outdated. are you open to updating it? And so the more people who do that, the more that institutions will make some of those, i, I don't wanna say simpler changes 'cause they can be logistically hard, but they don't require a huge amount of human energy, in terms of getting training. So that's kind of the first step.

20:11 - The second step is for, L-G-B-T-Q-I-A individuals themselves to refuse to accept care unless it is inclusive, when they have the ability to do so. So we don't always have that luxury. for my family, we came here, there was no other hospice. So for us, we went without care. That is not a great option. and because I've worked in hospice and palliative care, I felt comfortable providing the care for my wife, but I'm a social worker,

20:39 - like I am not qualified to be providing bedside care to anybody when it, when it's clinical care. So if there is the Ability for someone to choose between healthcare professionals, whether it is choosing between hospices or palliative care programs or local clinics, if people choose programs that are inclusive, have inclusive non-discrimination statements and have staff that have been trained on inclusion,

21:03 - other programs will start realizing that the market differentiator out there, becomes inclusion. And unfortunately in the United States, our healthcare systems are really largely driven by money. And so if people do not go seek out care, that is, if people stop going to providers that are not inclusive, people will realize that they need to actually become inclusive to be able to meet the needs of the market they serve.

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