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Scott Webb: Though it can be difficult to talk about or think about end-of-life care, my guest today feels that a healthcare directive is really a gift that we all give to our loved ones, so they don't have to make difficult decisions related to our care down the road. And I'm joined today by Dr. Nadine Semer. She's the Medical Director of Palliative Care at Salinas Valley Memorial Hospital.

This is Ask The Experts, the podcasts from Salinas Valley Memorial Healthcare System. I'm Scott Webb. So doctor, thanks so much for your time today. I have some relatives, my folks are in their 70s and this type of stuff that we're going to talk about today, health care directives, you know, advance directives, things that I've worked with them on and talked to them about over the years. And so this is a really great topic and, you know, probably one for all of us to begin thinking about as we reach a certain age, although I'm only 53 so I'm not sure that I'm quite at that age yet. But as we get rolling here, what is a healthcare directive and why is it so important that we all, you know, regardless of our age, make sure that we fill one out?

Dr. Nadine Semer: Well, you know, here at Salinas Valley Memorial Healthcare System, we like to think of advanced care planning as first off a way for people to think about, you know, what matters most to them, their personal values, their life goals, and then taking this information to help guide future medical care. It's something all adults should do. You're 53. You should have one. Once you're an adult, everyone should have one because we never know when an emergency will arise and there might come a time when medical decisions need to be made and we can't speak for ourselves.

And the reason people don't like to think about advance care planning is they think it's thinking about death and nobody wants to think about being sick or dying, but that's not how we look at it. We look at it as a way of thinking about how we want to live our lives. And that helps guide our medical care, because if our families are left having to make decisions for us in an emergency, if they don't know what's important for you, that can be a very burdensome thing for families. So we really think of this as a gift that you give to your family to do this early ahead of time before emergencies come up.

Scott Webb: Yeah, that's such a great way to put that, you know, and of course, none of us want to leave our family members, our spouses, whomever, in a position where they have to guess and wonder, "Well, what would he want in this situation? What would she want if this happened to her?" So when we think about these healthcare directives or advance directives, what types of information is on those forms? What types of things should we be thinking about?

Dr. Nadine Semer: So the most important thing and the one that's uniform across all types of advance directives, and there's about a zillion of them, you can get them from your doctors, you can get them from your lawyers, a lot of people fill out their advance directives when they're doing their estate planning, but the one thing that's uniform across all forms is naming your surrogate. So that's coming up with the person that you want to speak for you if you can't speak for yourself. And the key to that is the surrogate needs to be someone that will follow your wishes, that knows you very well and will be able to speak for you. It doesn't have to be a family member. It doesn't have to be anyone related to you, your choice. And why that's important is that if you don't name this surrogate, if you don't have these forms completed, by law, the person making decisions for you will be either if you're married, it'll be your spouse; if you have adult children, then it goes to adult children, or it will be family members. You have to really think strongly about whether they will be able to make decisions that you would want, not what they would want for you. It's a subtle distinction, but it's an important one. And that is one of the most important things about completing the advance directive. If you do nothing else, that is the most important thing, is to name your surrogate.

Scott Webb: That's such an excellent point and I'm sort of listening to you and thinking about this, and I'm sure one of the concerns, you know, is that those that are close with us, our spouses, our children, you know, may be in a situation where they're going to be thinking with their hearts, right? That emotions come into play. And I could see how there could maybe just be some real value in somebody that you trust, somebody that you respect, but also somebody who, you know, won't be maybe as emotional in making these decisions and will try to stick with what dad or mom or grandma and grandpa, whomever, what they wanted, right?

Dr. Nadine Semer: Yes. And that is why this is so hard and why naming your medical surrogate is so difficult. So especially with parents and children, I've had many situations where the patient who is the parent, they've had medical problems their whole life. They've been on dialysis for years. They've had lots of medical conditions and now they're on a ventilator and can't speak for themselves and maybe dying. And when I'm talking to their children, they're describing their mother is fighting, "We know she'd want to keep going. She loves us. She wants to be with us." But luckily we had the patient's best friend in the room with us because she hadn't done an advance directive, so we didn't know who would speak for her. But this woman was the one that took the patient to dialysis every other day and she was with the patient throughout thick and thin. And the family loved her, but they weren't there as much. And this friend could speak up for the patient and say, "You know, she's been getting tired and this is really hard. And I think at this point she would want to say no more." And that was very dramatic for the family and it really brought home to me why it's so important to name your surrogate and to name them wisely.

Scott Webb: Yeah, I see what you mean. And you mentioned this earlier, but where do we get the forms? Are these things we can just download online through our medical care providers, things like that?

Dr. Nadine Semer: You often can. The one that we like, we're in California, we use the California Advance Healthcare Directive and it's also in other states, it's on the Prepare For Your Care website. But each hospital, if you get admitted to the hospital, will have different advance directive forms. We have them in our clinics. As I said, attorneys have a type of advance directive that they often give out when doing estate planning. There are lots of things online. You just have to be sure that they're good in your state, because you don't want to download something that may not be valid in California.

And the reason we like the healthcare directive from Prepare For Your Care is that it's really in English. It's not in legalese, it's not overly complicated. And the first thing they ask you is really to think about what's important to you, to name your surrogate. And then they start asking you questions about what you think about your health, what's important to you, because the other thing with these advanced directors, we have a lot of patients that say, "Well, I make my own decisions. I don't want a surrogate." So when you have people like that, then you really have to fill out these advance directives because on there, there are spots where you can write about things, like if you got sick enough to need to be put on the ventilator and they weren't sure you were going to get better, would you want to go on the ventilator? If you're not eating, and let's say you have advanced dementia and you get to the point that you can't eat on your own or drink on your own, and they're talking about putting a feeding tube to keep you alive. It won't do anything to help your dementia, but it will help keep your body going. Would you want a feeding tube? Do you want to donate organs? Things like that. You can be very specific in these advance directives, or you can just say, "I'll let my surrogate make the decisions." So it can go either way.

Scott Webb: Yeah. I wanted to ask for every person who's one of those, you know, "I want to make my own decisions," are there folks that just really don't know what they want or they know they should do the form, but they just can't confront, as you mentioned earlier, sort of the death part of this? And what advice would you have for them if they are one of those types who just is like, "I don't know. I don't know what I want or what I'm going to want when something happens when that rainy day comes"?

Dr. Nadine Semer: A couple of things with that. So there's different types of, "I don't want to make my own decisions" or "don't know." Some people, and a lot of it is cultural, and we have to respect different cultures. Some families will say, "I don't know, talk to my daughter." "I don't know, talk to my husband. They make the decisions and I'll do it." We sometimes have a hard time with that. Here in America, we believe in autonomy and we think patients always have to make their own decisions, but them saying that they defer to someone else is a decision. And we have to honor that even though we wish they would tell us what they really want. So that's one thing.

The other thing to remember is, again, we'd like to focus on how you want to live and it's okay to live in a very debilitative state, maybe having more disabilities than you have. Those are things to think about because they go into what type of decisions you would make on how aggressive care should be if you're critically ill and maybe dying. So again, to kind of reframe it into how you'd want to live, instead of concentrating on death because that's when we shut down.

And the other thing to remember is it's not permanent, so you can complete your advance directive and you should actually probably look at it depending on how old you are when you fill it out, you should look at it every year, every other year and make sure the person you name as your surrogate, you still want as your surrogate, to make sure your feelings haven't changed. Because one thing we do know is what you write you want or don't want when you're healthy and death is hopefully many years away, maybe very different than when an emergency comes up and now it's life or death. Because it's written as an advance directive, it doesn't mean that it absolutely cannot be changed under any circumstance. It can always be readdressed.

Scott Webb: Yeah, that's good to know. And so let's say we've done the form, then we have our surrogate and all of that, you know, who do we submit that form to? Hospital, PCP, oncologist, whomever? I'm also wondering, can this be included in our electronic medical records?

Dr. Nadine Semer: The answer is kind of all of the above. So first off, when you do the advance directive, it needs to be signed, not just by you, but it either has to be notarized or by two witnesses. And the two witnesses, I think, one, they can't be the surrogate and one can be a family member typically, but one cannot. So it's not good if it's not either signed and witnessed or notarized because sometimes people forget that part of it. You should really give it to just about everybody. You should give it to your primary care doctor. If there's a hospital nearby that you have been to, take it to their medical records, so they get it in their computer system. If you haven't been to any of the hospitals, I'm not sure you can get it into their systems, but it may be worth just reaching out to their medical records to see if that's possible. It should be uploaded into the electronic medical record. I believe we have a way on our MyChart. I don't know if patients can do it themselves, but I know once you're in the doctor's office, the offices can get it uploaded. And at our hospital, we upload them. So they should be just about everywhere. Your surrogate should have a copy. If you've got children and they're not the surrogates, you need to tell them and they should have copies. The more copies, the better.

Scott Webb: You mentioned this earlier, you touched on this that there may be some issues traveling from one state to another or one country to another, and those whatever form we used being honored. How can we ensure the best we can anyway, once we've done the form and it's been notarized and we've dotted all the I's and crossed all the T's, that if we travel and we have an issue, that it's going to be accepted?

Dr. Nadine Semer: So there's no way to ever ensure that even when you're in the state that it's good. I mean, we always hope that people will follow the advance directive. I think in most states, if you've gone to the effort and have a fully completed advance directive, they will certainly take that into account. But actually, the advance directive does not obligate providers to follow every word that it says, which is kind of disconcerting to me and other people, because it's more a guidance, it's a legal document, but it's not a medical document.

There is a form that California and I think almost the majority of states have, but not all of them do yet. That's called a POLST, which is a physician's order for life sustaining treatment. Some states call it a MOLST. There's lots of different letters for it, but the basic idea is that it's a one-page physician order. So that has a little bit more backing to it because it's a doctor's order or a nurse practitioner and a PA can sign it as well. And that really is very specific and it's for people that may have a life-limiting illness, and it's more expected that maybe they'll die within the next few years or less. And that talks specifically about whether you would want CPR if your heart stopped. It asks how aggressive the care should be if you get really sick. And that's a form that if you have completed that, and you know, you don't want something like a CPR, if your heart stops, that you should probably keep with you. And that has a little bit more power that people should follow it if you've got that form. But even then, if you have a distraught family members that disagree completely with that form, the reality is it's not always followed.

Scott Webb: Yeah. As much as we try to plan for the future and, as you've said, sort of plan for how we want to live, sounds like there are circumstances when despite having a directive, despite having a doctor, you know, fill out the POLST, that things can get a little messy and a little emotional. Am I hearing that right?

Dr. Nadine Semer: That is very true. And we hope that these forms can help smooth that out, but I'm afraid humans being human, nothing is perfect. And that's also why it's so important to talk to your families, to make sure that they know what you want, because then they'll believe it. If they think you're a fighter and they see an advance directive that says, "I don't want a lot of stuff," they're not going to believe it if they didn't know about it ahead of time. You really need to communicate your wishes to the families, to people around you. And this advance directive is really a way to start that conversation, which can really bring about intimacy in families. I mean, it can be a very uplifting experience, even though everyone's afraid of it and they think they're going to come away talking about nothing but death, but we see families get closer together after having these discussions actually. So that's why we really call it a gift that you give to your families and loved ones.

Scott Webb: Yeah. You know what? That's a perfect way to finish today. It really is a gift that we pass on to our family members to try to have it be a little less messy, less emotional, to try to think of everything we can to dot those I's to cross those T's, to make this a smooth process, as we try to figure out or try to determine any way how we want to live at a certain point. And this has been educational today, thought provoking and really thinking of this as a gift for those whom we love, you know, who love us and just trying to make this as smooth as possible down the road. So, this has been really great. Thank you so much for your time and you stay well.

Dr. Nadine Semer: Thank you for having me.

Scott Webb: For more information, visit our website at svmh.com and follow us on Facebook, Twitter, Instagram, and LinkedIn.

And if you found this podcast to be helpful, please be sure to tell a friend and subscribe, rate, and review this podcast and check out the entire podcast library for additional topics of interest. This is Ask the Experts from Salinas Valley Memorial Healthcare System. I'm Scott Webb. Stay well, and we'll talk again next time.