Advance Care Planning for LGBTQIA+ Community
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BJ Miller, MD and Kate Cataldo, RN host a discussion on serious illness and end of life considerations for the LGBTQIA+ community.
LGBTQ+ individuals often face challenges and barriers to accessing health services and, as a result, can experience worse health outcomes, adding unnecessary suffering to an already difficult period. While LGBTQ+ individuals have many of the same health concerns as the general population, they experience certain health challenges at higher rates. We discuss the details of advance care planning and end of life planning that an LGBTQ+ individual needs to know in order to advocate for himself/herself/themselves, or someone they're caring for.
We discuss:
0:00 Introductions
3:29 Acknowledging the LGBTQIA+ community members
5:50 Defining “family” - family can be a very loaded topic, our culture as a whole expects that family will step in as a default
7:35 The concept of chosen family, people who understand us
10:10 Understanding the legal hierarchy of next of kin when it comes to not being able to speak for yourself - if you have not designated someone as a proxy, there is a line-up of people who will be contacted starting with (legal) spouse, then parent, then child, sibling, etc.
13:32 Finding someone to appoint as a surrogate to make decisions on your behalf as relates to medical decisions for care - you have to speak with them about what you want! Your family of origin might feel that they should have the authority to make decisions if something does happen, let your family of origin know if you’ve appointed someone else
23:52 Thinking beyond illness and end of life, funeral planning is also an important aspect of advance planning and naming someone for funeral decision making as the person who is your medical decision proxy will no longer be valid after a death - honoring your memory and legacy as an LGBTQIA+ person
33:30 You can write up additional directives for your care! Name your personality traits, what you like and don’t like, what’s important to you - write it on a piece of paper and include with your other documents
38:07 Thinking about and planning for long term care in a facility if you identify as LGBTQIA+, there is vulnerability for a population that is already pretty vulnerable, there are valid safety concerns, will people treat me well? Can I be out?
40:20 Advocacy organization for LGBTQ elders, SAGE Care provides training for agencies that work with community providers to provide cultural competent care
42:00 If long term care is on your horizon, interview the facility and ask questions about their training and environments - do they take care of other LGBTQ patients? What is their response?
45:20 You may find yourself having to teach clinical team members and others about your needs, your body and care, there can be fatigue and exhaustion that goes along with this
46:34 Thinking about and pre-planning for the potential of dementia as relates to LGBTQIA+ community - many people may be fearful of information being revealed in a state of progressing memory loss and dementia
48:55 Coming out during a period when illness or end of life is a factor - when time is of the essence, it can be unfair to have to feel everyone’s reactions, how to get this information out while protecting your energies
51:35 What to do when you find yourself in a care facility or hospital and feel that you’re not being treated well - what resources and staff are available to speak with?
56:16 What types of services are provided at Constellation Deathcare?
57:07 Are death doulas exposed to considerations for LGBTQIA+ community?
Links:
SAGE Care: https://sageusa.care/
Constellations Deathcare: https://www.constellationsdeathcare.com/
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