Introduction: Here's another edition of the BayCare Health System’s podcast series BayCare HealthChat with Melanie Cole.

Melanie Cole: Welcome to BayCare HealthChat. I'm Melanie Cole, and today we're discussing advanced directives and health care decisions that affect the LGBTQ+ community. Joining me is Jacqueline Weller. She's a Bioethics Consultant with BayCare. Jacqueline, it's a pleasure to have you join us today. And this is a really under talked about topic, and I'm so glad that we're talking about it today. So before we get into specifics for the LGBTQ+ community, what is advanced care planning and what are advanced health care directives? Why are they important?

Jacqueline Weller: Well, first thank you for having me and they are so important. I know advanced care planning is really, it allows you to decide the kind of health care treatment you would receive if you were not able to make decisions or speak for yourself, maybe due to an injury or an illness. And the advanced directive is really a legal document that explains your medical decisions about you. It's what decisions you want, decisions which relates to the care that you'll receive or care that you absolutely do not want. It lets your health care team, your loved ones, know what you want and what you would not want. And it gives you a way to tell them your wishes, but at the same time help to avoid some confusion later on, when you have these incidents that may happen. It also ensures your wishes are known. And also one of the important things is it can reduce the stress of the medical decision process on others. You know, whether it's your surrogate or whether it's just the family member acting as a proxy, it will help guide them in the decision making that needs to be done.

Host: Well, thank you for that. Now, since we're talking about these decisions that affect the LGBTQ+ community, tell us about the extra importance of advanced directives for this community. Are there differences and why is it that much more, really important that they take care of these bits of paperwork?

Jacqueline Weller: Well, for the LGBTQ community, a lot of times, you know, when we're talking about advance directives, we're talking about maybe instances where not only for illness and injury, where you may temporarily not be able to make decisions for yourself, but then regain your capacity and be able to make decisions on your own. However, then there are times when we may be making decisions where we're talking about end of life kind of decisions for individuals. So for the LGBTQ individual, it can be filled with complex family and social dynamics and can result in the individual's biological family denying the role of their partner, their friends, and family of choice with which they feel where the individuals find acceptance. So their friends and family that are part of their lives, who are very important to them, may be totally pushed away.

And that's why it is important to have these documents, you know, planning, naming a surrogate. That is, I feel one of the most important aspects of an advance directive, and a surrogate is a person you name to make decisions for you when you're not able to do that. And without formal documentations, you know, same sex partners have minimal or no rights regarding medical decision making, and end of life treatment planning for their partner. And without, for example, without advanced care planning, they want to rely on the friend or chosen family. But sometimes that doesn't happen. So if they don't have it, what could happen is that it may be at the mercy of the estranged relatives. You know, if somebody hasn’t named an individual, they may have been estranged for years and years.

And then when something happens, they're called upon to make decisions. And there was an incident where less than two years ago, where a transgender woman died without written funeral directions. And relatives with authority over her funeral, who had refused to accept her identity while she was alive, held services that erased her female identity. So that's why advance directives are really critical for the LGBTQ community. They have rights and they have a right to choose who can make decisions for them. And they also have the right to decide what they want and do not want when it comes to medical treatment, funeral planning, organ donation, those are some of the areas that can be on an advance directive.

Host: Well, thank you for that and what an interesting story, but it kind of gives the scope of the thing, doesn't it, it really explains why this is so important. So, tell us, we hear these names bandied about, Jacqueline, that we don't really know what they mean. Tell us what is an advance directive, tell us what a living will is, or a medical power of attorney. We hear all of these different terms and we really don't know what they are,

Jacqueline Weller: You know, and that's true. To start with there are two types of advance directives. The first one is your health care surrogate, which involves naming an individual to make decisions for you when you can't do it yourself. And then there is the medical or the, actually in the state of Florida, they have a durable power of attorney, which includes health care. And in that kind of document, it will name an individual to make decisions for them, if they are unable to make decisions for themselves. And then the second type is your living will and the living will lets everyone know what your wishes are. You know, if you're in a terminal state where you have an illness or injury where there's no chance of meaningful recovery, or you have an end stage condition, or you're in a persistent vegetative state. They provide example, if you do a document, you may decide whether you want CPR or you don't want CPR. Maybe you want a feeding tube or maybe you don't want a feeding tube. Or if you want a breathing tube down your throat, those are the kinds of decisions you make on a living will.

They also provide on a lot of the advance directives for the living will part is whether you would want palliative care or hospice involved. Some people don't want hospice or palliative care, but then they have the option that they could have it. And also on our advance directives, there are a lot of people that may want everything done. It's just your choice. It's what your wishes are. And I also recommend that on a living well, there's usually space where you can provide your thoughts on your personal values. What's important to you? What is quality of life to you? You know, what does it mean to you? Sometimes your relaying that on an advance directive helps us even as caregivers to have a better understanding what your wishes are. Also, you know, your spiritual beliefs are very important to know. And some people may say, I only want to be on a ventilator for two weeks. And after that, if I'm not better than I don't want any further treatment, so you can really make it so that it fits what you want. And you know, if you do put any information on there, it's so important to write it down, to let us know what your wishes are, so that we make sure that we're honoring your wishes and what you would or would not want at the time.

Host: So, when do they go into effect, Jacqueline, tell us a little bit about how that works and also some clarification on common law and domestic partnerships and why that's important in this case.

Jacqueline Weller: Well, the living will goes into effect in the State of Florida, when two physicians document that you have a terminal condition or you have an end stage condition, or you're in a persistent vegetative state, those are the conditions in the State of Florida where two physicians have to document that you're in that state and then you're living will, will go into effect. And then the health care surrogate document is where you name your individual, who makes decisions for you when you can't do it for yourself. Now, sometimes you could be in the hospital, have a minor procedure, but you were under anesthesia. And for a short period of time, you may have some confusion. You may not know where you're at, or you're not able to make the medical decisions for yourself for that short period of time. So your health care surrogate document would come into effect. But however, once you, regain your ability to make your own decisions, that determination ends and you return to making your own medical decisions. Now as for our domestic partners and the common law in the state of Florida, we do not have common law here that was done away within, I believe in 1968. However, we do have domestic partnerships.

Now they're not in all counties in the state of Florida. So I always recommend that, you know, check with your county to see if they do have a domestic partnership registry, and that's where two individuals go in and you go and register your partnership. And so what it is, it's like a marriage without the, you know, without the whole, that part of the legal aspect of it. You just go in, you register with the court and everything that such as for health care, your partner will be your decision maker. And it's important to have that document. So if your partner is in the hospital or, you know, in the doctor's office, you give them a copy of that so that they know that your partner is your decision maker and vice versa. Now, I would like to add that if a person, if they want to terminate their domestic partnership, then they have to go back to the court and fill out the forms to terminate the domestic partnership. So then once that is done, it's over. And if somebody needed to check up on it, they would be able to do that with the clerk of the court.

Host: So, Jacqueline, what are some considerations when we're choosing our medical power of attorney, when we're setting up these advance directives, how do we go about selecting our health care agent? And also how do we start that conversation with a loved one about planning for this situation? Not everybody's comfortable talking about this. Not everybody wants to have that conversation. So what are we looking for in the person that will be our proxy and how do we start the conversation if we are looking to one of our older loved ones?

Jacqueline Weller: Well, from my experience, it is hard. People don't want to talk about end of life. They don't want to talk about trying to decide, do I want CPR, or if I want a feeding tube, they are hard conversations because we are in essence talking about end of life decisions. And they are very hard. But the important thing is you got to keep trying. Cause sometimes, maybe the first time around, maybe you want to talk to your family and they're saying, no, no, no, but you got to keep after it and keep talking with them, keep bringing up the subject. I have had families tell me that at their Thanksgiving one year, they said their granddaughter brought it up at a Thanksgiving dinner while everybody's hungry and they want their dinner. But so nobody was leaving the table and she actually said, it turned out better than they thought it would. And they started discussing it. And by the end of the Thanksgiving weekend, over half of the family had completed their documents or were going to go have them done with their attorney. So, it's one of those things where it's, you got to keep at the conversation, keep talking, keep at it.

And the considerations for selecting a decision maker, it's important to have someone that understands you, that understands what your values are, what your spiritual considerations are. You need to have that talk with them to see if they would be able to do that. Would they be able to remove you from a ventilator, if you were at end of life, would they be able to do that? Would they be able to have the discussions with the health care team and be your advocate? That's the most important thing is to be your advocate and handle conflict with others who might disagree with your wishes because the health care surrogate that you decide to make decisions for you has to be able to handle maybe other family members who may be disagreeing with the decisions you're making. Even though you may be honoring your friend or family member's wishes that are on their living will. So that's important. You have to have someone that's going to advocate for you and follow your wishes.

Host: So, as we wrap up Jacqueline, can people download their state’s advance directive? How does someone get started? What is the step to make it official? Kind of give us your best advice on why it's important, especially for the LGBTQ community and what they have to do to get started?

Jacqueline Weller: Like I said, for the LGBTQ community, it is so important, especially for you, because you want to make sure that the person that you want to make decisions for you is allowed to make those decisions. Because if you do not designate them, then they will not be allowed to make those decisions for you. And that is part of the law, because if you can't speak for yourself, what happens is then we have to go to the Florida law, which goes down a hierarchy, which is your family. So for an LGBTQ community, it's so important that they, you know, whoever they want to make decisions for them to do it. And then once that is done to complete a living will, to let them know what your wishes are for end of life, funeral, organ donation, all your wishes, anything extra that you may think that is important to you put on that document, you can download across on the websites. There are different advanced directives. And the Florida State statute has it within there's. The Department of Health of Florida also has an advance directive. BayCare has a brochure which is beautifully done and it kind of walks you through. And it has question and answers also in the brochure that can be downloaded from baycare.org/advancedirectives. And that will get you started. And in the State of Florida, you don't need a notary. You just need two witnesses to witness your signature. And those witnesses should not be part of your health care surrogate decision. They should be totally somebody – I always recommend don't have it be family, just have maybe two friends, witness your signature.

Host: Thank you so much, Jacqueline, really great information and so important. And especially for the LGBTQ community, it is important that they have their wishes known. So thank you for joining us today and to learn more about advance directives or to download a free guide to advance directives today, please visit our website at baycare.org for more information. That concludes this episode of BayCare HealthChat. Please remember to subscribe, rate and review this podcast and all the other BayCare podcasts. I'm Melanie Cole.