​

Amanda Wilde (Host): It's not easy to think about, but making advanced healthcare decisions is both practical and essential. Two experts are here to help. We're talking about advanced directives and palliative care with Carla Green and Jonathan Clarke. Both are licensed certified social workers at the UAMS Winthrop P. Rockefeller Cancer Institute.

This is UAMS Health Talk, a podcast from the University of Arkansas for Medical Sciences. I'm Amanda Wilde. Carla, Jonathan, welcome to the podcast. Thank you for being here.

Carla Green: Thank you.

Jonathan Clarke: Thank you.

Host: Jonathan, I'm going to start with you just randomly. What's the difference between palliative and hospice care? And let me say, I've heard this explained before and it doesn't seem to stick with me. What is a simple way to understand the difference between palliative and hospice care?

Jonathan Clarke: The way I like to tell people about that, and it can be confusing and there's kind of a lot of mystery around both terms. But really, what all it is, is about providing quality care for each and every day. You want to maximize your, goodness for every single day you have. In, hospice, you are no longer seeking treatment for your condition. In palliative care, you are. That's really the main difference. It's honestly two sides of the same coin. Other than that, it's pretty solely dedicated to enhancing the quality of each and every day.

Host: So, both palliative and hospice care do that. But in palliative care, you are pursuing other treatments. And in hospice care, you have foregone any further medical interventions. Is that correct?

Jonathan Clarke: Yes. Perfect.

Host: So Carla, let's move to advanced directive and define that one.

Carla Green: Yeah. And advanced directive is actually a form that has different aims depending on which state you're in. So, it can be called an advanced directive, a healthcare surrogate healthcare proxy. But essentially, it is a form that people are able to name somebody to make some medical decisions for you in the case of an emergency. Say, you're having a surgery and you're going to be intubated, or maybe you're getting a little dementia and, eventually, you know you're going to become confused. You want to be able to say who is going to be that person that we as a hospital are going to contact to make some medical decisions on your behalf.

Host: Are there different types of advanced directives, Carla?

Carla Green: So, like I said, there's healthcare surrogates, healthcare proxies, they're all basically the same thing. Depending on your location, statewide, it can be called something different. But those forms are very basic as to who are these people that I would want to make my medical decisions on my behalf, whether it be your spouse, your child, a friend, whomever you feel most confident in making those decisions.

And then, in addition to that, sometimes we have what they call a healthcare power of attorney, where most people will have to go to like a lawyer, and do some more kind of in depth planning as to not only medical decisions, but maybe financial decisions and a little bit more in depth. So, that's something that is usually done with a lawyer.

Host: And Jonathan, why do you tell people this is important to do in advance, to have an advanced directive?

Jonathan Clarke: Well, things can happen in life, you can become ill, you can become injured. You just never really kind of know what's around the corner. And so, we like to try and get these forms and these processes started upstream before you really need them. Because, you know, should bad things happen, should you become injured or ill, or maybe even looking at the end of life, you don't want to have to be relying on your family to make those decisions during what's going to be a difficult time. So if you're earlier upstream in that process, then you can do it when you're a little bit more calm and you have more time to think about it. You can kind of consider who you want to make decisions for you and what those decisions are.

Host: Right. And if you designate someone to make decisions for you and you have to think about what those decisions will be, you're going to possibly have some really in-depth conversations with people. Do either of you have advice for how to approach those conversations? Jonathan?

Jonathan Clarke: I would say directly and simply. And a lot of people want to believe that you have these conversations and, "Oh, I don't want to have these," "I don't want to talk about this." Well, we just kind of need to talk about it. And people are resistant to the idea, of course, because no one wants to think about someone being sick or injured or even dying. But if you can start the conversation, at the end of the day, everything becomes easier because then there's a sense of relief in knowing that you're going to get what you want and they know what you want to have.

Host: So, there's some empowerment in it for you, right, Carla?

Carla Green: As the patient, I always kind of recommend that they take that opportunity to voice their wishes and as to who they want to name, instead of kind of leaving it up to the powers that be. Say, you have more than one child, you don't want to have them kind of fighting as to who's going to be the one making the decisions. If you've already put that in paper, that kind of takes the pressure off of them to kind of decide who's making those decisions.

Host: And Carla, do you have recommendations for who is best to name on the forms?

Carla Green: Usually, I recommend anybody that you know that knows your values, whether that be your spouse, your child, your best friend, whomever that person is, that knows your values the best. Obviously, if you have somebody that's in the medical field that has a better understanding of things that may be happening to you or may eventually happen to you, sure, that's great. Not everybody has that. So, it's usually kind of whoever you feel most confident at the end of the day knows what is important to you.

Jonathan Clarke: And it is willing to say it out loud.

Host: Right. So, that is really something to think about. Jonathan, can you continue by just taking us through the process of these forms? Like who can witness them? Where do I get the forms? Where do we turn them into?

Jonathan Clarke: They're very easily accessible here at the hospital. All of us social workers have access to them. Many of the clinics even have access to those A-U-A-M-S forms. There's a larger form called Five Wishes, which is kind of a nationwide thing. And they essentially have two parts.

One is the durable power of attorney, and that is who you want to make decisions for you. The second part is the living will, and it's what those decisions are. The people who are the durable power of attorney, the decision-maker cannot witness the form, but the form can either be witnessed by somebody other than the durable power of attorney or even notarized. People on your treatment team can't witness that form, the people on treatment team or the durable power of attorney. But essentially, anyone else who's willing to watch you sign the form can witness it for you. In our state, we only need two witnesses. Once that form is filled out, it can be brought back to us. And us social workers can directly send that to medical records, and so that gets put into our computer system.

Host: And then, Carla, can I make changes after submitting the form?

Carla Green: Yes, you can. If you make changes though, then there needs to be a new form done. Say if today you decide that you want to name your two daughters. But six months from now, you want to name your daughter and your son, okay, well, now we have to do a new form because you're changing that form. Once make changes to the form, obviously it's null and void. So, we just do a new one.

Host: Is there anything else that we need to know about advanced directive and how palliative care and hospice care might fit into that?

Jonathan Clarke: Part of what hospice and palliative care both do is something called goals of care. And what we do is we sit with the patient and the doctor and try to determine what the goals of your care are going to be. Part of that goals of care discussion always is best if it includes an advanced directive, because that really is what you're doing, is establishing what those goals are.

Host: And Carla, any last words for how we should consider thinking about this in our first steps to getting to filling out that form and having these conversations and making these decisions?

Carla Green: Yeah, just consider how you want your wishes to be reflected to your family and those people that are important to you and how doing those forms on your own is kind of taking the pressure off of them. You are already telling them what you want, you're already telling them who you want to be your voice instead of them kind of scrambling to hope that they're making the right decision. And that's a very difficult place to put our families at the end of the day to make some of these very difficult decisions.

Usually, I recommend updating an advanced directive, say like every year to two years, and or even more frequently if there's been, say, a status change. If you have a new diagnosis, if you have a new hospitalization, if say one of the people that you named is no longer with us or no longer in your life, no longer involved in your decision-making, then you may want to consider changing or updating those.

Host: But once you've done the groundwork, I mean, you've done the really hard work because you have thought about it, you've had the conversations. And after this conversation, I am convinced that that is something that is best done in advance. And I bet a lot of parents think about this because they don't want their children to be put in an awkward position if they should need to make healthcare decisions. But it's really important for everyone, isn't it?

Carla Green: Yes, absolutely, 100%. It is very important for anybody that has children, that has any type of medical diagnosis, whether it be long term or short term, we have many patients that are dealing with, cancers and myeloma and lymphoma for many, many, many years. And they , despite the fact that they've had this diagnosis for many years, still don't have something in place as to medical decision-making. So, it is difficult for a lot of people to consider doing something like a healthcare survey.

Host: The thing is chances are you'll have to do it sooner or later, and you don't want to have to do it when you're under duress. So, that's what's convincing about doing it in advance, I think.

Jonathan Clarke: It's also sort of a gift for your kids because you're absolving them of the need to make the decision for you. You're letting them know what it is you want, and not just your kids, but anyone else in your family.

Host: Yeah, exactly. So, think of it that way because you really are doing it for others. Thank you both for walking us through this process, both in person, as you do at the hospital and virtually here on the podcast. Really appreciate all this great information, Carla and Jonathan.

Jonathan Clarke: Well, sure.

Carla Green: Thank you.

Host: Carla Green and Jonathan Clarke are licensed certified social workers from the UAMS Winthrop P. Rockefeller Cancer Institute. To schedule an appointment at the UAMS Cancer Institute, please call 501-296-1200. If you found this podcast helpful, please tell others about it and share on your social media. You may want to check out our entire podcast library for other topics of interest to you. This is UAMS Health Talk, a podcast from the University of Arkansas for Medical Sciences. Thanks for listening.