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Talking About End of Life Wishes~An Interview

Katie: This individual is on our support group, and her husband is HD positive. He is symptomatic, but not too far along. They haven't talked about the end of life decisions together. She wants to know how to talk about, about end of life decisions. Also, is there anything from advanced directives or his wishes she should bring up? I think Katrina could be brought in on this, with your end-of-life care and extensive experience. And, also, what, do you need lawyers?

Lisa Mooney: I think, first, this is a fabulous question, and I'm so glad you're asking it early and not later. Second, the fact that you're thinking about it, you're on the right track because it is a process. You do have to start thinking about these things early on. They are hard conversations just as most conversations with HD.

The fact that you're having a discussion is key to most of these things. It is sometimes hard to do for sure. It is not something that you want to open up, right before a wedding or, you know, some fabulous vacation.

But you also don't have to have the whole conversation and make all these big, huge, lifelong decisions in one sitting. It's just about starting the conversation. Sometimes people will utilize, like if they've been watching a movie or a TV show or something that brings up end of life issues like feeding tubes or someone on a ventilator for the rest of their life, or different things. You can ask like, "Hey, have you ever thought about what you would want? Like, if you got in that situation, would you want everything done for you? Or would you want nothing done for you? Or would you want something, you know, some variety in between?"

Then you can bring it back up another time when there's another opportunity. Or maybe you do sit down and say, "Hey, as a family, we're going to sit down and have some of these discussions about what all of us would or wouldn't want in certain scenarios." You don't have to use all scary scenarios. You could use scenarios like, "Where would you want to go on vacation if we all went on vacation one last time together." You can start that way. But then bring in some other more important things like people's wishes about pain, tolerance, supportive measures, true end of life. Things like feeding tubes, hydration, ventilators, and tubes down your throat to help you breathe and things of that nature. You also want to know what people feel like as far as placement. Whether it's Huntington's or not, most families cannot keep a loved one at home until death. It isn't easy. And it takes a lot of emotional resources. It also takes a lot of financial resources. So that may not be realistic.

So don't make promises that you can't keep. But always tell your person, "We will love you, and we will do everything we can to uphold your wishes in every possible scenario." so that's key. Don't make promises you can't keep. The other thing that people usually forget to talk about is what kind of supportive measures someone wants? Like what kind of deaths does someone want to have in a perfect scenario? Of course, none of us can predict that. But do they like music? Do they want music surrounding them? Are they someone who wants family to be around them and hold their hand and talk about all the fun times and memories they shared? Or would they rather be alone? Are they spiritual? Do they want a chaplain or other faith-based community members involved in their end of life sort of supportive care? You want to know all these things for your family members. And again, these are not questions that will be asked at six o'clock on Tuesday and resolved at seven o'clock that same Tuesday. Just like Huntington's is a journey, these are questions that can evolve and change as the journey goes on. Someone might be very adamant at 18 that they never want a feeding tube or never want to be on a ventilator. And then they go through the process of life. And now here they are in their 50s or 60s and maybe now they're like, "You know what I still have quality of life. And just because I can't swallow and eat food, I do want a feeding tube." So it's okay to change your mind. Decisions that are made today are not written in stone.

There are advanced directives and things like five wishes, physician order for life-sustaining measure, or a POLST. Those are documents that people want at the end stages of life.

But this is a conversation that should start early. Lawyers are not necessary. You can bring them in if you want. So if you want to do something that's more legal in nature and put together a living Will which talks about your finances as well as your personal wishes at the end of life, you totally can do that. It is not 100% percent necessary. You may experience some conflicts during this time. Like it may be that your loved ones want some things that you don't think they should do, or you don't like. Those are conversations that you just need to take a deep breath and say, "I hear what you are saying but I'm concerned about it because of this, this and that. Then you can sort of hash that out. Just because you wouldn't want that doesn't mean that your loved one can't have that. It's about supporting them through whatever their wishes are. And your wishes can be different. The husband and wife's wishes could be different. Siblings, it doesn't matter. Katrina, what do you have to add?

Katrina Hamel: So everything you said is spot on. I think that the perfect point is that everyone's going to die, we're all going to die. And to make that a subject of conversation that like, "Hey, when I die, I see myself, being cremated. And would that be okay with you? How do you feel about that? Do you want to be cremated as well? Let's have this conversation unrelated to Huntington's, just as two humans having a conversation."

Lawyers are essential when it comes to things like properties, finances, things like that especially if you're a single person and not married where it's joint ownership.

My brother gets monthly from social security and has no savings. And so there isn't a huge concern there. What we did take a big look at, and we took advantage of was Five Wishes. And you can find this paperwork either through your doctor or your social worker or what have you. You can also find it at, very simple.

And it's a legal document t. as long as it is signed and witnessed. It is a legal document. It goes over things you want, and you can add in things like, "When I'm unable to speak and talk, I don't want my feet tucked in under the covers, or I want them tucked in under the covers. I want it to be somewhere around 80 degrees." The things that you think are going to matter when you can't speak anymore.

In my personal opinion, it's all about quality. You know, quality of life. I'm not trying to live the longest I'm just trying to live my best life. And, so just going over those different things that can impact your life quality or quantity. If you want to live the longest, you can live for whatever reason. You can write that down.

And this helps in family situations when there are different opinions. When you have large families, especially large HD families that may say, "oh, uncle so and so did this, but aunt so-and-so did this. Mom wanted that, but dad wanted that". Whatever it is, it's not going to be the same, no matter what, you're going to have different feelings and opinions on your own care and your own life and your own death.

So to take advantage of that, the five wishes is extremely important. The earlier, the better you can have conversations. I mean, if you are with someone who is not symptomatic at all the conversation doesnt have to be hard. Just two humans, having a conversation about life and death. And you can both fill one out and make it so much more normalized. So, again, I do have a lot of experience of being a caregiver and managing a care home with end of life and things like that. So, if anyone ever have questions or want some extra support, or just that rooting on of like, you got this, you can do this, I'm in your corner, and you can reach out to me as well.

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