Maggie McKay (Host): If advanced care planning is overwhelming to you, you are not alone. In honor of National Healthcare Decisions Day, we're going to learn more about it with Dr. Jim Hornstein. Welcome to Wise and Well presented by Community Memorial Healthcare. I'm your host, Maggie McKay.

Thank you so much for joining us today, Dr. Hornstein.

James Hornstein, MD: Thank you so much for having me.

Host: Just to start with, could you explain what an advanced directive for healthcare entails?

James Hornstein, MD: Absolutely. Essentially, advanced directives are the official paperwork that allows each one of us to make plans for a time when we may not be able to think about or communicate our own health care choices clearly. Now in California, there are actually two parts to an advanced directive. The first part is where you get to name a healthcare agent, which we also call a durable power of attorney for healthcare, or also a surrogate decision maker.

Now this agent or power of attorney is a really important person in your life because it is their responsibility to communicate and advocate for your wishes if you're unable to do so yourself. Now in a very real sense, this is the person you literally trust with your life. And you alone get to choose who you want to be your healthcare wingman.

Now the second part of the California Advanced Directive is the so called Living Will part. This is the component where you get to choose for yourself what kinds of medical treatments you would or would not want if you were at the end of your life. This part of the Advanced Directive oftentimes confronts us with some really difficult what if questions.

For instance, what if you were hit by a bus and remained in a coma and never woke up? Would you want to continue all advanced life support like ventilators and feeding tubes and code blues? Or would you prefer to transition to care focusing more on your comfort and your calmness and be allowed to pass away naturally?

Although these are difficult things to think about, as you mentioned, many people have already developed strong feelings about the kinds of personal care they would like to receive. And an advanced directive lets all of us make these very personal and private decisions for ourselves, which when you actually think about it, isn't it the way it ought to be?

After all, as Americans, all of us value our individual liberty and our individual freedoms. So who better to make the tough decisions about ourselves but ourselves? That's why I'm a very big fan of anyone over the age of 18 exercising their right to make decisions about our own health care choices by ourselves.

Host: Just very quickly, why is California different?

James Hornstein, MD: It turns out every 50 state gets to pick their own advanced directive. Now, some states have just a durable power of attorney. Some states have just a living will. Some states have other things that they add, such as organ donations, or picking a private doctor, or actually separate things out. So it actually turns out that it depends where you're at as to what it, there are 50 different states that have 50 different advanced directives.

Host: Wow. So if you move, do you have to change it every time you move a state?

James Hornstein, MD: So that's, that's a great question. Actually, no. It turns out the Supreme Court in 1990 said that advanced directives at any state would be considered clear and convincing evidence in any other state. However, if I was just visiting New York, let's say, who has a different advanced directive than we do, well, traveling there, everybody would accept mine.

But if I was actually moving there for the rest of my life, yeah, I probably should use their form.

Host: I have to say, what you were talking about, we all enjoy our freedom to choose. When my husband and I did it, we are on totally opposite sides of the question, do you want to be kept alive or not? I mean, I'm like, yes forever, and he's like, no, the second I get sick, just pull the plug.

Also with, you know, do you want to be buried or cremated? There's so much to think about. So why is it considered so crucial to have an advanced directive for healthcare? Because I have a lot of friends who don't, and I said, you really need to get on that.

James Hornstein, MD: Those are really, really good questions. And it deserves a really good answer. And the answer is I mean, look at just like politics today, there is virtually no one correct way or one way that you would say, Oh, all Americans believe this, or all Americans believe that. To be honest with you, I think there's very little consensus in what all of us agree to, whether it's in politics or in, um, in our own healthcare decision making, which is to say, since we don't all agree, everybody should have the right to pick whatever their own views are of a good life.

For instance, I would never criticize you to say like, oh, well, you've made the wrong decision because it's different than mine. The fact of the matter is that's what the law gives us. And that's what good ethics gives us, which means every individual person has the right to say, yes, my life, even if I never wake up from a coma, has value in my way of thinking about it, in my religious views, in my spiritual views, in whatever views I have, which allows me to say, sure, keep me alive forever.

Whereas other people would be horrified by that idea that says, look, if I cannot communicate with somebody else, if I can't enjoy a sunrise, if I can't get out and take care of myself, well, then that's not really my life. That's just a bunch of organs that are just being kept alive without really myself being a part of it. So again, there is no national consensus, and the fact that you and your husband disagree, well, I mean,

Host: That's why you have one.

James Hornstein, MD: Yeah, that's the point, is that we really don't know what somebody else wants. And they may in fact be, I mean, I don't know, you may vote for Biden and he may vote for Trump. It's just, the fact of the matter is there is no national consensus about what the right thing to do is. So the right thing to do in this case is to allow individuals to make their own personal decisions. That's what I'm a big fan of.

Host: Yeah, that's why it's crucial to have one. Dr. Hornstein, why is it considered so crucial to have an advanced directive for healthcare?

James Hornstein, MD: First, let me share that study after study has shown that as much as we think our loved ones know exactly what we want, they actually don't. Now, whether it's because of the emotions of being in a medical crisis or people's memories getting jumbled, or actually family members arguing about what you really would have wanted; if you don't clearly state without ambiguity through a documented advanced directive, then it is very common and in fact very sad to watch family and loved ones arguing and feuding at your bedside about what you really wanted. The other reason advanced directives are crucial is purely practical. As I mentioned in California, we do not have an automatic decision tree or hierarchy if you do not tell us who makes decisions on your behalf.

Now in other words, just because you're married, your spouse does not automatically become your decision maker. And in fact, you can choose virtually anyone you want to be your official health care spokesman. It could be your spouse, or it could be your parents, or your siblings, or your adult children, or your best friend, or your gardener.

Frankly, the bottom line is this, you get to choose who you think would make the best response to your wishes and your goals and your choices, should the need arise. In addition, it's a very good idea for you not only to name one person as your decision maker, but also to name a first and second alternate if for some reason your agent can't or won't be able to speak for you.

And then finally, a third reason it's crucial to fill out an advanced directive is also practical. And this has to do with the fact that studies have shown that about one in three of us, in other words, one in three of all Americans at some times in their lives cannot speak for themselves. Now this could be because of a lot of things such as a car accident, or a head injury, or a stroke, or a medication side effect, or whatever.

The point is, until you wake up and can again speak for yourself, somebody else needs to speak on your behalf and have all the legal muscle to be a strong advocate for all of your healthcare decisions.

Host: Who should individuals consider giving their advanced directives to? Lawyers, doctors, family?

James Hornstein, MD: Now that's again, a really great question. A big mistake I've seen in the hospital is a person goes to the trouble of filling out an advanced directive and then puts it in their safety deposit box. That's a big mistake. Instead make as many copies as you'd like and give one to everyone who might be involved in your future healthcare needs.

Certainly give copies to your agent and also your two alternatives. Anybody else in your immediate family, including close friends, of course give one to your primary care doctor and any specialist, your local hospital, if you're living in a nursing home or a nursing care facility. And of course, your personal attorney.

Host: So why is it advisable to encourage our parents and those that we care for to complete advanced directives and review the documents with them?

James Hornstein, MD: Well, that's because Americans by and large really don't like to talk about getting older or talk about illnesses. And especially we don't like to talk about death. In fact, many of us actually believe that if we don't talk about something, then it won't happen. Unfortunately, this is never the case.

What's more, many studies have shown that older people actually want to talk about getting older and their thoughts and hopes and fears about the end of life, but somehow we just never seem to get around to having these important conversations. And that's why I think having these conversations with your families is so important.

It seems to me the time to do that is actually now. Ask your parents or your grandparents what are their most important goals if their health situation changes. What are their biggest fears and what are their worries about their future? But also remind them we're all in this together.

Host: So you mentioned changes and it's going to happen to everybody probably. In the case of a change in medical condition, like a diagnosis of cancer or COPD, for example, would the expressed wishes in an advanced directive typically undergo alteration? Or if so, how might they change?

James Hornstein, MD: Again, this is a great question and absolutely they can change. It is extremely wise to review and update your advanced directive after any major health change or illness in your life. In fact, it's not even a bad idea to review your advanced directive routinely every ten years. Why? Well, because as our health and life situation changes, it's very likely that our goals and our healthcare choices might also change.

Now to actually make any changes when you decide to make them, all you really need to do is draw a big thick line through your old advanced directive, write void, and then fill out and complete a new one. Just don't forget to give a new copy of this new advance directive to everyone.

Host: But don't you have to get it notarized or by a lawyer because couldn't anybody do that and on your behalf and nobody would know who did it.

James Hornstein, MD: Yeah, in California, and this also changes over all 50 states, in order for you to fill out an advanced directive, there are two ways to make it official. Either, number one, have it notarized by a notary public, or by number two, have two individuals sign it, and they do not have to be who the individuals are named.

They could be anybody. They could be your neighbors. They could be your friends. They could be virtually anybody you want to sign it who simply documents that you are who you are. You do not need to go see a lawyer.

Host: And you were talking about changing them every so often maybe every 10 years. Is it possible to amend or revise those advanced directives over time and how often I think you said at least every 10 years should people review and update these documents?

James Hornstein, MD: Absolutely. I think it's 100 percent possible to change or amend your advanced directives whenever you want. Now, aside from the changes we mentioned in your overall health or us just getting older, it's also very possible that the people you've named to be your surrogates may also have experienced changes.

Those changes could be things like divorce, or your family moves, or even illness or death of your surrogates, which may force you to make changes to your Advanced Directive. But even though all of our lives, in fact, always change, it's still very important to put a lot of thought into what your cha cha, what your choices would be as to who you would name in your new and revised advanced directive. Because remember, at whatever age you are, your surrogate decision maker should be someone you trust wholeheartedly to understand and carry out your wishes and your values.

Host: And should we be carrying a card in our wallets, Dr. Hornstein, that indicates that we have an advanced directive in place?

James Hornstein, MD: Absolutely. Once your advanced directive is properly completed, it is crucial that these invaluable documents are available when they're actually needed. Now here at Community Memorial Healthcare in Ventura, on the back of the advanced directives that we use at our hospital, there are pre-printed wallet cards which all of us can carry.

On those cards it says that you as the patient has created an advanced directive and says it should contact the person that you've chosen, usually your surrogate decision maker or power of attorney, and it has their phone number. Also, on the back of these cards, I strongly advise that you put your primary care physician and their office phone number and their email address.

Host: Is there a card that you can get somewhere like online that you're talking about or you just make up your own?

James Hornstein, MD: Well, that's another good question. There are lots of places where you can get an advanced directive form. First, you can actually visit Community Memorial Health Care's website at mycmh.org. Spelled M-Y-C-M-H.org and search Advanced Care Planning for a free copy of the form. Also on their website, there is an easy to follow video link with instructions as to how to fill out the entire Advanced Directive.

But beyond that, you could also get a free paper copy of an advance directive by simply visiting the front desk at either Community Memorial Hospital or Ojai Community Hospital. Also copies are available at almost all primary care doctor's offices, the Centers for Family Health, in addition to simply Googling a California advanced health care directive.

But of course you can also fill out an advanced directive with your private attorney. But in this case, it will most likely cost you hundreds of dollars.

Host: Mm hmm. And so that card that you were talking about that should be in our wallet, is that also on that website?

James Hornstein, MD: It is. Yes.

Host: Okay, great. All right, everything you need would be there. The advanced care planning, the form, a video showing you how to do it, the card, everything.

James Hornstein, MD: Absolutely everything. You can go on there, click it, and then spend some time and it will actually help you go through item by item everything that you need to fill out. Again, it's free, it's available, it's easy to follow, and then you can pass one out to, you know, your family, your friends, your attorney, your doctors, your hospital, everyone.

Host: That's so informative because I always thought you had to have a lawyer do it, or at least a notary person. So that's really good to know. Thank you so much for talking with us and sharing your expertise about this crucial process and making it more understandable and achievable.

James Hornstein, MD: My pleasure. Thank you for having me.

Host: Again, that's Dr. James Hornstein. If you'd like to find out more, you can go to mycmh.org and go to advanced care planning. And if you found this podcast helpful, please share it on your social channels and check out our entire podcast library for topics of interest to you. I'm Maggie McKay, thanks for listening to Wise and Well, presented by Community Memorial Health Care, a podcast from Community Memorial Health Care.