It’s Pride season! Congratulations on your commitment to helping make end-of-life options a reality for all. This online toolkit provides valuable educational materials and practical information to help get our resources to and engage with the LGBTQ community
SECTION I: LGBTQ Outreach: What You Need to Know
Understanding the Law
Before reaching out to the LGBTQ population, understanding some barriers and challenges that LGBTQ individuals and their partners may still face when planning or preparing for the end of life is helpful.
Advance Directives and End-of-Life Planning
An advance healthcare directive is a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves because of illness or incapacity. Every American adult has the right to create an advance healthcare directive, and it is the obligation of every hospital to honor these documents.
Without an advance healthcare directive, end-of-life care decisions are often left for spouses or close family members to determine and administer. For patients in same-sex relationships, the state in which they reside may or may not recognize their marriage or unmarried partner as fitting one of those categories, even after the Supreme Court of the United States of America recognized same-sex marriage as a constitutional right guaranteed to all Americans. Some states have possibly not yet amended statutes that address healthcare decision making in relation to same-sex marriages.
Access your state-specific advance directive by visiting: CompassionAndChoices.org/advance-directives/
What Are Default Surrogate Selection Laws?
When there is no appointed guardian or advance healthcare directive in place, a doctor or the healthcare team may select a surrogate medical decision-maker. State default medical decision-making laws contain prioritized lists of individuals who are best situated to control the course of medical care for incapacitated patients. Usually, the most appropriate surrogate is deemed to be the spouse of the incapacitated individual.
Decision-making authority that would be automatic in heterosexual relationships may be actively denied in same-sex relationships, and life partners may be prevented access to one another at the end of life. Additionally, some states have priority lists that determine who is authorized to make healthcare decisions when no documentation is available, and a same-sex partner may unfortunately not be recognized as the default decision-maker.
Careful end-of-life planning is essential for LGBTQ patients so they know and understand their options for end-of-life care. As outreach workers, be familiar with state statutes as they pertain to healthcare decision-making and educate others on the importance of completing their advance healthcare directive to ensure their surrogates are named and wishes honored.
LGBTQ Partners and Allies
As a part of LGBTQ outreach, Compassion & Choices is building relations with national and local affiliates of the organizations below. As outreach efforts grow, Compassion & Choices will look to obtain letters of support and will seek specific sponsorship activities. Compassion & Choices’ staff and volunteers who are members of these organizations should inform them of the importance of end-of-life choices and encourage them to support our efforts.
Association of Gay and Lesbian Psychiatrists — A community of psychiatrists that educates and advocates on LGBTQ mental-health issues. (aglp.org)
CenterLink — Community of LGBT Centers; exists to support the development of strong, sustainable LGBT community centers and to build a unified center movement. (lgbtcenters.org)
Equality Federation — A movement builder and strategic partner to state-based organizations advocating for LGBTQ people. (equalityfederation.org)
GLAA — Gay and Lesbian Activists Alliance; is an all-volunteer, nonpartisan, nonprofit political organization that defends the civil rights of lesbian, gay, bisexual and transgender people in the nation’s capital. (glaa.org)
GLMA — Health Professionals Advancing LGBTQ Equality (previously known as the Gay & Lesbian Medical Association); The world’s largest and oldest association of LGBTQ healthcare professionals. The GLMA adopted a supportive stance on medical aid in dying as an end-of-life option in 2015. (glma.org)
HRC — Human Resources Campaign; A civil rights organization working to achieve equality for LGBTQ Americans (hrc.org)
National Organization of Gay and Lesbian Science and Technical Professionals, Inc. — Empowers LGBTQ individuals in science, technology, engineering and mathematics by providing education, advocacy, professional development, networking and peer support. (noglstp.org)
National LGBTQ Task Force — Advances full freedom, justice and equality for LGBTQ people. (thetaskforce.org)
NBJC — National Black Justice Coalition; The country’s leading civil rights organization dedicated to the empowerment of LGBTQ and same gender loving (SGL) people, including people living with HIV/AIDS. NBJC’s mission is to end racism, homophobia, and LGBTQ/SGL bias and stigma. (nbjc.org)
SAGE — Advocacy and Services for LGBT Elders. (sageusa.org)
Victory Fund — The only national organization dedicated to electing openly LGBTQ people who can further equality at all levels of government. (victoryfund.org)
Compassion & Choices Volunteer Resources
People who educate themselves and others are our greatest hope to keep the movement growing. Whether you host a workshop, house party or canvassing event, Compassion & Choices offers various toolkits, resources and trainings on our Volunteer Resource Center webpage: CompassionAndChoices.org/vrc/.
We asked members of the LGBTQ community within the Compassion & Choices’ network to explain why this movement is important to them. You can read their stories by visiting CompassionAndChoices.org/pride-blogs/.
SECTION II: Pride Engagement
In June 1969, lesbian, gay, bisexual and transgender (LGBTQ) persons rioted following a police raid on the Stonewall Inn, a gay bar in New York City. This riot and the protests that followed were considered the birth of the modern LGBTQ equal rights movement and sparked Pride marches across the country. Initially, the last Sunday in June was celebrated as “Gay Pride Day,” but today, Pride has expanded to a month-long series of events, attracting millions of participants around the world.
Over the years, Pride events have grown from political protests to include positive promotions of self affirmation, dignity and equal rights. They now encompass efforts to build community, celebrate sexual diversity and gender variance, and increase LGBTQ visibility as a social group. Pride events can range from solemn to carnivalesque, and can include marches, rallies, commemorations, workshops, symposia, parties, concerts and large festivals.
Why Pride? Because having a presence at your state or city Pride event is a great way to build the Compassion & Choices’ movement. These events draw hundreds of thousands of LGBTQ leaders, activists and allies. By working with local action teams and volunteers, and coordinating activities with coalition partners, you can expand Compassion & Choices’ reach in the community, recruit new volunteers and gain greater visibility.
Understanding that the LGBTQ rights community and the end-of-life options movements are closely intertwined is important. Some of the earliest aid-in-dying advocacy came from communities most affected by the AIDS crisis. The LGBTQ community is already one of the most supportive medical aid-in-dying constituency groups in the country, with current studies indicating over 90% support. Now it is important to leverage that support by heightening awareness of end-of-life issues that limit individual care options and steps patients can take to ensure their choices for end-of-life care and dying are honored.
Planning for Pride Events
Find out where Pride events are taking place in your area by visiting gaypridecalendar.com.
Once you have identified the type of event (march, festival, workshop), you can determine and plan the appropriate activities. A list of suggested Pride activities, a planning checklist and a link to an evaluation form to measure your impact are provided.
Suggested Activities for Pride Events
- Host an informational booth with educational materials — staff or trained volunteers to educate the public on end-of-life issues. Our Pride in a Box (see below) contains literature and promotional items for LGBTQ events.
- If you plan on speaking to a wider audience, please visit the Volunteer Resource Center and review our messaging documents. Our Issue Training section will be especially helpful to you! CompassionAndChoices.org/issue-training/
- Collect petition signatures — have mobile and well-informed advocate(s) engage the crowd to gather contact information from people who wish to join Compassion & Choices to advance the end-of-life choice movement at CompassionAndChoices.org/join.
- Construct a float — We suggest coordinating with an LGBTQ-allied organization to select a unified and Pride-relevant theme, such as: “I support end-of-life choices.” Floats can be large or small. A float can be built on just about any wheeled structure, including a flatbed trailer, lawn tractor, golf cart or antique car.
- Share the Pride selfie — Use a Compassion & Choices banner or cutout to create a backdrop for selfie photographs. With this fun and trendy activity, individuals or small groups can share their Pride experience on social media. Be sure to tag us on Instagram (@CompassionAndChoices), Facebook (@Compassion & Choices) and Twitter (@CompAndChoices).
- Coordinate activities with allied organizations (i.e., ACLU, HRC, NBJC) — This might include something as easy as checking with allies before reserving tables or booths so you can be in close proximity or next to each other, or maybe run an activity together. Collaborating can save costs, make more efficient use of your resources and volunteer time, and enhance your impact.
SECTION III: Pride in a Box: Description of Contents
Compassion & Choices’ “Pride in a Box” is a free resource comprised of educational materials, LGBTQ and state-specific information and forms, petitions and other applicable promotional items to help staff and volunteers conduct effective outreach at Pride events. The following is a description of the contents you’ll find in your box. Outreach workers can refer to this to describe each tool and should make sure there is an adequate number of copies in their box when preparing for their events.
- Compassion & Choices’ fans
- Compassion & Choices’ rainbow-branded hand sanitizers
- Compassion & Choices’ rainbow-branded bracelets
- “My End-of-Life Decisions: An Advance Planning Guide and Toolkit” booklet — This guide will help people think through their priorities for end-of-life care, complete an advance directive and other forms they may need, choose a representative to speak for them if they cannot, and consider common end-of-life medical interventions so they can specify what they want or don’t want — right up to the end. And it will guide them have valuable conversations with their healthcare providers and loved ones.
- “My End-of-Life Decisions: An Advance Planning Guide and Toolkit” request cards — Hand out these postcards so supporters can download or order their own copies of the “My End-of-Life Decisions Guide and Toolkit” from Compassion & Choices.
- “Transforming End-of-Life Care” brochures — This brochure gives information about Compassion & Choices and has a donation envelope attached.
- Compassion & Choices’ outreach cards — These postcards are invitations for individuals to access our robust end-of-life planning materials offered on our Plan Your Care webpage.
- Compassion & Choices’ sign up sheets — People can easily and quickly join the movement by signing up using the provided sheets or online by visiting CompassionAndChoices.org/join. This opts them into receiving our national emails and news from their states, as well as monthly newsletter and access to our tri-annual online magazine.
- Evaluation form — This online form tracks the outcome of your community campaign. CompassionAndChoices.org/event-evaluation/
In addition, ensure that copies of the following documents, which can be found on the Compassion & Choices website, are included in your LGBTQ outreach. Most of these resources are available to download and print.
- Dementia Provision — A Compassion & Choices exclusive, adds language to an advance directive advising physicians and family of your wishes should you be unable to direct your care due to Alzheimer’s disease or other forms of dementia. Download: CompassionAndChoices.org/dementia-provision/
- My Particular Wishes — This informs physicians, nurses or other care providers of a patient’s consent or refusal of certain specific therapies. Download: CompassionAndChoices.org/my-wishes/
- Assisted-Living Facility (ALF) Rider — If a resident of an assisted-living facility (ALF) wants to remain there until the end, they can use the ALF contract rider to ensure the home is suited to their choice. Download: CompassionAndChoices.org/alf-rider/
- Sectarian Healthcare Directive — This addendum clarifies that admission to a religiously affiliated facility does not imply consent to care mandated by the institution’s religious policies and directs a transfer if the facility will not follow the preferences in an advance directive. Download: CompassionAndChoices.org/healthcare-directive/
- Values Worksheet — This worksheet includes questions to consider when making end-of-life decisions and preparing documents concerning one’s healthcare preferences. Download: CompassionAndChoices.org/values-worksheet/
- Hospital Visitation Form — This gives unmarried couples hospital visitation authorization for their partner. Download: CompassionAndChoices.org/visitation-form/
- A Gentle Death — To ensure that advance directives are communicated to and respected by healthcare providers, individuals may want to use this sample letter to their doctors to discuss their end-of-life wishes. Download: CompassionAndChoices.org/gentle-death/
- Finish Strong: Putting YOUR Priorities First at Life’s End — Finish Strong by President of Compassion & Choices Barbara Coombs Lee is the guide to achieving the positive end-of-life experience you want and deserve. Finish Strong is available for purchase here: CompassionAndChoices.org/buy-finish-strong/