Advance care planning is important for everyone, especially members of the LGBTQIA+ community. Eric Horwith, MSM, LSW from UPMC Home Healthcare and Family Hospice explains how to get started in ensuring your medical wishes are honored in the future.
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– [Narrator] This podcast is for informational and educational purposes only. It is not medical care or advice. Clinicians should rely on their own medical judgments when advising their patients. Patients in need of medical care should consult their personal care provider.
– Advanced care planning is important for everyone, but particularly members of the LGBTQIA+ community. Hi, I’m Tonia Caruso. Welcome to this UPMC HealthBeat Podcast. And, joining us right now is Eric Horwith with UPMC Home Healthcare and UPMC Family Hospice. He’s also an adjunct professor of health policy and diversity and inclusion at the University of Pittsburgh School of Social Work. Thank you so much for joining us.
– Thank you, Tonia, for having me.
– When it comes to advanced care planning, what exactly do we mean?
– By sheer definition, Tonia, advanced care planning is the process in which somebody identifies a health care decision-maker for themselves and also lays out what care they would want should something happen. I often equate advanced care planning as a gift to your loved one. It’s also your own personal insurance plan, so that your wishes and desires can be honored if and when the time comes that you may need serious medical treatment regarding a situation that’s come up.
– OK, so in general, advanced care planning is important. Why, particularly, for members of the LGBTQIA+ community?
– We know from research and studies out there that, by and large, folks who identify as a member of the LGBTQIA+ community tend to be discriminated against more than folks who are not identified as a part of that community. They also tend to be ostracized, if not flat-out rejected from their families of origin, and they also suffer health disparities at an overwhelmingly increased rate than their counterparts in the non-LGBT community. All of that, Tonia, factors into how people in the community receive care and how they make decisions about their health care. So, all the more important that we’re having these conversations for members, so that they’re prepared when the time comes if they need someone to speak on their behalf.
– Coming from Family Hospice, you see situations where these are in place, and then situations where these are not in place. What are the complications or the risks if someone does not have an advanced care plan?
– Sure. Without an advanced care plan, then your health care providers need to make the decision of how to provide care for you on your behalf. They may not know your wishes, they may not know what matters most to you. Beyond that, especially for members of the LGBTQIA+ community, we work through a hierarchy of decision-makers within a family. If you don’t have a surrogate designated, and we need to move to that hierarchy of decision-making, it may be someone that you don’t want to make decisions on your behalf. Often, members of the LGBTQIA+ community have their own defined family, not a family of origin. And those folks matter most to them. So, without having these documents in place, it really does leave the provider in a position of having to make decisions that they may not know what’s best for you.
– We’ve been talking about this plan. What are these documents? And, really, what are the steps to advanced care planning?
– Sure. Steps in completing an advanced care plan are going to be individualized and unique to each person. Two main documents that everyone wants to have and should have in place are a living will and a health care power of attorney. A living will is a document that outlines certain medical treatments that you may or may not want should the time come. Things such as resuscitation, blood products, tube feedings, antibiotics. The power of attorney designates a surrogate decision-maker for you in writing.
– Do I need to go to an attorney to get these documents? What does that process look like?
– Both a power of attorney or a living will do not require that you seek legal counsel. It doesn’t require in the state of Pennsylvania that you have a notary be involved as well. You just need to have two witnesses present to actually see that you’ve signed those documents. The living will often has a component in it that designates a surrogate decision-maker for you. The health care power of attorney can do the same, but often goes into more detail regarding legal decisions or financial decisions that that person will make on your behalf. Again, both documents are essential, but not required to have a notary to sign off on it.
– Where does one get these documents? Can I get them online? Talk a little bit about how one goes about doing this.
– Yeah, these documents are readily available virtually anywhere online. You can also receive documents from your own legal counsel. At UPMC, if you go to our website, UPMC.com, and do a simple search for advanced care planning, we have the Pennsylvania Health Care Directives available free of charge for anybody to look at.
– This can be a difficult conversation to get started in your family. No one really wants to talk about death. Are these documents and advanced care planning only for the elderly, only for someone with a diagnosis?
– Yeah, Tonia, we actually recommend people to complete their health care directives or even execute a power of attorney well in advance of a medical crisis. The last thing you want to do is to wait for a situation to arise in the moment of crisis and try to get these thoughts out. Remember, too, that advanced care planning is simply that: putting a plan in advance of a situation. So, when we’re well, and healthy, and able to make our own decisions, that’s when you should be putting these plans into place and having these conversations.
– And, so, is this something that you recommend folks take to the doctors with them, take to the hospital with them? And what does that look like? Who is it, actually, that a family member would be presenting these documents to?
– Sure. When you have a conversation about a health care advanced directive, your living will, you want to have those conversations with those in your life that matter most, those that would respect and honor your wishes and carry them out. You also want to make sure that you’re reviewing this with any of your health care providers, so that they’re aware, too, of your wishes and desires. Make copies for your own keepsake, make copies for your health care provider, make copies for your faith denomination. But always make sure that you’re reviewing this, not just with family members, but with your health care providers as well.
– And you talked about this earlier. From the perspective of the health care provider, they are thankful when they see these documents in place. And, talk about their approach, especially here to all patients, and why this is so important to a health care provider.
– Absolutely. Research, again, that we’ve done, both at the University of Pittsburgh and otherwise, has stated that most people, health care providers or family members, when asked how a loved one would want care delivered, or what type of care delivered, guess wrong, and they guess wrong about a third of the time. So, these documents are so essential to make sure that your physician, that your family members, know what matters most to you. Again, if your physician doesn’t bring it up, often due to reluctance on their part, then, have that conversation. Arm yourself with the materials, discuss that with your doctor, and make sure that your plan’s in place. And, without a directive in place, then, we are asking family members to come to a common ground. When you have multiple children, multiple siblings involved, we often can’t find common ground. Regrettably, I’ve seen situations where a health care institution has had to seek guardianship on behalf of the patient because family members can’t come to an understanding or an agreement. So, again, the gift you’re giving to your loved one is putting information in writing so that they don’t have to second-guess or make that decision on your behalf.
– And, when you have these conversations with folks, do you find that they’re surprised, especially younger people who don’t have a diagnosis, who aren’t facing some sort of crisis, where you say, “You should get this taken care of now”?
– Yeah. Most people don’t plan for situations like this, Tonia. We plan for our high school and college graduations. We plan for our marriages, perhaps to have children. Even our retirement, we don’t plan for our end of life or a serious illness. And these conversations are challenging and difficult, but it makes things much better when the time comes for those surrounding you – health care providers, loved ones – to assure that your wishes are being carried out. I often say that the greatest gift that we can give others is the gift of honoring each other’s wishes and carrying those wishes out to the way we want them to be done.
– This is an issue that UPMC thinks is extremely important, and has been doing lots of outreach in this area. UPMC recently held a virtual seminar and an in-person seminar with the Beckwith Institute talking about this issue. And, a part of that, you were also talking about “Five Wishes,” and a “Five Wishes” document. And, tell me what that is and how that plays into everything.
– Legal documents in place in the Commonwealth of Pennsylvania, Tonia, are our living will and health care powers of attorney. A supplement to that is a wonderful document that we use at UPMC and a lot of other health care institutions in the region. It’s called a “Five Wishes” document. The living will document, Tonia, lays out what treatments that you may want. Again: CPR, tube feedings, blood products, antibiotics. The “Five Wishes” lays out how you want those treatments to be delivered. It gets into a lot of detail, such as, “Have music playing at my bedside if I’m not feeling well,” or, “I want my dog to be with me as well, or a favorite blanket on my lap.” So, the “Five Wishes” is a nice supplement to augment the clinical medical components of that living will.
– And, so, tell me a little bit more about the event that was held, participants at the table, and really, the importance in why folks felt this was something that you all needed to do.
– Recently, we had convened a small work group of professionals within the health system from our home health and hospice division, from the Wolff Center at UPMC, to the Palliative and Supportive Institute. We looked into some research and realized that through a study from JAMA in 2022 rated experiences of sexual and gender minority people when making decisions about advanced care planning. Overwhelmingly, the results from that study reflected that people who identify as members of the LGBTQIA+ community do not feel comfortable having these conversations, and actually feel they’re going to be discriminated against. Our work group got together and decided to have an outreach initiative to the community regarding this very important topic. Thanks to Nick and Dotty Beckwith from the Beckwith Foundation at UPMC, we were able to be given a financial support to provide community education to roughly around 100 members, virtual and in-person, providing a speaker panel of experts to answer questions regarding this matter. We were thrilled and overwhelmed at the response and look forward to future educational opportunities from that regard.
– Right. And, really hoping from that, folks will go and start to talk to their friends about it, so that more people are aware and more people learn.
– Yeah. Respondents and participants of the program, Tonia, had stated that we need to do this more often. And, the first thing that they’re going to do is talk to their loved ones, their family members, and their physician about this. So, again, the Beckwith Institute wants to be sure that innovative frontline education is a part of their mission, and we feel we accomplished that with this program.
– And, so, as we close, what do you want to leave people with? If there’s a message you want them to walk away from this conversation with, what would it be?
– If I can leave the audience with one thing, that is the most loving thing that you can do for someone is to put your wishes in writing. And, the most loving thing that someone can do for someone else is to honor those wishes. So, have those conversations early on. Have those conversations candidly when the time comes.
– Eric Horwith, thank you so much for coming in and spending time with us today. Some really good information. We appreciate your time.
– Thank you so much, Tonia.
– I’m Tonia Caruso. Thank you for joining us. This is UPMC HealthBeat.