For Pride: Preserving Your Dignity & Rights to Make Sure Your Voice Is Heard

For Pride: Preserving Your Dignity & Rights to Make Sure Your Voice Is Heard
The Importance of Advance Care Planning for LGBTQ+ People and How MyDirectives Can Help

by Ron Wozny, SVP of Marketing & Business Development, MyDirectives

Advance care planning (ACP) is a critical process for everyone, but it holds particular significance for LGBTQ+ individuals. To understand why, consider the unique challenges and disparities in healthcare the LGBTQ+ community often faces.

It’s not uncommon to face discrimination and stigmatization in healthcare settings. Understandably, this can lead to mistrust and an outright refusal to seek care. This mindset may also lead to avoiding putting necessary healthcare planning in place. This means a person’s voice may never be heard, leading to unwanted and non-beneficial care. While this can be said about anyone, the LGBTQ+ community faces unique challenges others do not.

The Unique Challenges Faced by LGBTQ+ Individuals in Healthcare

To begin, there’s the matter of seeking care in the first place. According to a 2020 survey by the Center for American Progress, 15% of LGBTQ+ Americans reported postponing or avoiding medical treatment due to discrimination.[1] This hesitation can have significant consequences, especially in situations where timely and appropriate medical interventions are critical.

Further complicating matters, legal and social recognition of LGBTQ+ relationships can be inconsistent. Partners may not be recognized as next of kin, and the absence of clear legal documentation can result in exclusion from vital healthcare decisions. This can be particularly distressing in emergency or end-of-life scenarios. Advance care planning is not just important. It’s essential.

A Real-life Story

Jessica Zan, senior director of clinical implementations for MyDirectives, shares a story from her experience working as a clinician in a large healthcare system in Oklahoma. She tells of a gay man in her care who had been ravaged by chronic heart disease.

“He was a handsome man who was now in a hospital bed staring down the end of his life,” Jessica said. “He never married his partner, even after same-sex marriage was legalized, because they figured it didn’t change much for them. They shared with me that they already lived their lives with commitment and love, so they didn't need something extra on top of that daily promise to each other.”

The man said his father never approved of his sexual orientation or partnership, and here at the end of things, the only two people left in his life were his father and his partner. But this complicated things, because in a “next of kin” state like Oklahoma, state laws dictate that if a person doesn't have advance care planning documents, completed to the state's specifications, then the person responsible for medical decisions when that patient can't communicate anymore is the next of kin. Some states even go so far as to designate several layers out who qualifies as next of kin – but it's a family of origin thing. Unfortunately, it’s not an “I've lived with this person, shared a home, and built a life for 22 years” kind of thing.

“Situations like this are so heartbreaking to witness,” said Jessica. “Without a correctly completed advance directive or medical power of attorney, my patient's partner could be left out of all decision-making, and even marked unable to visit. If his partner visited, would conflict rein in his room, rather than loving and kindness?”

Fortunately, one of Jessica’s ACP facilitators went to check on him, and he asked to create a medical power of attorney. “This was great news, but the facilitator accidentally missed a signature required by the state of Oklahoma at that time,” said Jessica. “Thankfully, I noticed this when I was doing quality review at the end of the day, and even though it was after hours, I sent her back to get the form finalized before leaving.” It's a good thing she did. He lost consciousness the next day.

The potential disaster of a missed signature just shows how urgent and fragile this situation can be. Thankfully, his voice was heard, and his wishes were carried out as he and his partner wanted.

The Reality of Advance Care Planning in the LGBTQ+ Community

Despite the known importance of advance care planning, LGBTQ+ individuals are less likely to have completed these documents compared to heterosexual and cisgender people. In fact, a study published in the American Journal of Hospice and Palliative Medicine found that only 13% of LGBTQ+ adults had an advance directive, compared to 30% of the general population[2] (a number which is also too low).

There are plenty of reasons why LGBTQ+ individuals contribute to lower rates of advance care planning.

• Discrimination and Mistrust in Healthcare – As mentioned above, past experiences can discourage people from engaging in advance care planning, and mistrust can lead to a reluctance to discuss sensitive topics, including end-of-life care.
• Limited Awareness and Education – There is often a lack of awareness about the importance and availability of advance care planning within the LGBTQ+ community, and educational outreach is frequently lacking.
• Emotional Barriers – Like anyone else, members of the LGBTQ+ community generally don’t like to think about making plans for their death.

How MyDirectives Can Help

At MyDirectives, we offer a comprehensive, easy-to-use platform that simplifies the advance care planning process. Here’s how we can support the LGBTQ+ community in making informed and respected healthcare decisions:

• Legal Recognition and Empowerment – MyDirectives enables users to either create or upload legally recognized advance care planning documents, allowing their healthcare wishes to be accessible, known, respected, and followed. Our platform allows LGBTQ+ individuals to designate their partners or chosen family members as their healthcare agents, thereby safeguarding their right to make crucial medical decisions.
• Personalized and Inclusive Planning – We know everyone’s needs and preferences are unique. MyDirectives provides customizable options that reflect the diverse identities and relationships within the LGBTQ+ community. Individuals can specify particular healthcare providers and communicate personal values and goals, so their plan is tailored to that individual person.
• Secure and Accessible Documentation – MyDirectives stores all documents securely in the cloud, making them easily accessible to healthcare providers anytime, anywhere. This eliminates the risk of lost or forgotten paperwork and ensures that medical professionals can access vital information quickly in critical or emergency situations.

Why Now is the Time to Act

The healthcare landscape is constantly evolving, and uncertainties can arise at any time. Having a clear, legally recognized advance care plan in place is essential for ensuring that your wishes are honored, no matter the circumstances. For LGBTQ+ individuals, who may face additional barriers and biases, proactive planning is a powerful tool for self-advocacy and protection.

When it comes to healthcare goals, preferences, and priorities, everyone deserves to have their voice heard. At MyDirectives, we are dedicated to supporting the LGBTQ+ community in taking control of their healthcare decisions. By providing a user-friendly, secure platform for advance care planning, we want to eliminate the disparities and empower every individual to live with the confidence that their healthcare preferences will be respected and upheld.

[1] Center for American Progress. (2020). Discrimination Prevents LGBTQ People From Accessing Health Care.

[2] Luth, E. A., Besirevic, S., & Williams, T. (2019). Advance Care Planning in the LGBTQ Community: Making It Personal. American Journal of Hospice and Palliative Medicine, 36(12), 1053-1058.