Transcription:
Advance Care Planning: The Time is Now!

Maggie McKay (Host): Advanced care planning requires those hard conversations between loved ones in order to honor wishes. Dr. Danielle Noreika, medical Director of Palliative care at VCU Medical Center shares with us why open lines of communication are critical and can help with care and treatment decisions. Generally, these conversations are considered for end of life. However, things can happen at any age, so it's important to have your wishes in order.

This is Healthy with VCU Health. I'm Maggie McKay. Today we'll find out why the time is now to get your advanced care planning prepared. Welcome, Dr. Noreika. Thank you so much for joining us and helping us understand why this is not something to put off for another day. And the basics we need to know when making these tough decisions. So, to begin, what is an advanced directive or living will in Virginia?

Dr Danielle Noreika: Yes. Thank you for having me. Advanced directives are forms, not only in Virginia, but in other states as well, that we use to document wishes in regard to healthcare in certain circumstances. And I do want to highlight that those documents are really based in a conversation. And that conversation is probably the most important part of this discussion, where an individual who is very sure of their goals and hopes and wishes for the future is able to discuss with whoever their decision maker is and their family, what their wishes would be and have that conversation sort of serve as the launch point for that document.

That document then is a testament to what is most important to that patient. And the document itself can be completed by a number of folks to include lawyers as well as providers, (so physicians or Advanced Practice Providers), as well as social workers and chaplains. So, we really encourage folks not only to consider the form itself, but also to consider really having those (and we know they are difficult) conversations with their loved ones about what's important to them in regard to their medical care.

Maggie McKay (Host): Do they have to be written down or is an oral agreement okay?

Dr Danielle Noreika: That's a great question. There are provisions in Virginia law for an oral agreement, but they are very specific, and many are not really aware without referencing back to the law of what they are. The safest way to make sure your wishes are known and respected is to actually have them written down, in that form. Again, lawyers can draft these for you, or there are forms that we use in a standard manner that are accessible on the internet and in medical facilities.

And we really do encourage that to be the main way that we express those wishes because they are very easy to access, and they are a very standard way for our medical teams to understand what those wishes might be. Sometimes the oral format doesn't have as much structure to it, and then it may be more difficult for those treating teams later in an emergency to really understand what the gist of that conversation and those wishes were.

Maggie McKay (Host): And is there an age limit Dr. Noreika, do you have to be 18, for example, to write out a living will?

Dr Danielle Noreika: These forms are intended for folks who are legally adults. So usually 18 and older, and folks who are overall able to understand their medical circumstances. There are patients who may suffer from illnesses that make it difficult for them to understand all of their medical conditions, and some of those folks have other family members or appointed guardians who might make their medical decisions. And these forms are not for those folks. But aside from that, everyone 18 and older could have this form at any time.

And I know that sometimes when you are younger and healthier, it may seem like it's not a tool that applies to you, but we really do encourage everyone, no matter how young, to consider thinking through that process and giving family members an idea of what's important to them. As you mentioned before in the introduction, we never know what the future holds, and we always want to be prepared.

Maggie McKay (Host): And something I think might be confusing to a lot of people, the difference between advanced directive, durable DNR, and power of attorney. How are they different?

Dr Danielle Noreika: That is a great question because I think the number of forms we have these days does lead some folks to sort of give up before they've even started with trying to figure out. So, we discussed the advanced directives as a tool for certain medical conditions that could occur in the future for any adult, who is able to make their medical decisions.

Part of that process can be naming what they call a healthcare agent or a power of attorney, and that is a person who can make decisions for you if you are ever in a circumstance where you can't make decisions for yourself. So, if, for instance, you were in a terrible car accident and you weren't able to wake up and hear what the doctors had to say and answer questions.

You will then have appointed a person who can do that on your behalf and help us make those medical decisions for you. And that's that power of attorney or healthcare agent documentation. The last is actually quite different than those first two, that Virginia durable DNR, and that is different because it's an actual order form.

So unlike the other forms I just spoke of where a lawyer might help you prepare them, or your healthcare provider might, this is an order that actually has to come from a healthcare provider and what it tells any medical personnel in Virginia is that your wishes are if your heart should stop that you don't want to be what we call resuscitated (or have your heart restarted). That is something in Virginia that requires a provider order.

There is a standard form for it, and if that is something that you would want for your healthcare, that would be a great conversation to have with a provider who's caring for you because that advanced directive documentation is not enough to perform that function. So, we really want folks to be aware that there are certain forms that you might really need to talk to your provider about because they're more orders than these statement of wishes or appointment of agents.

Maggie McKay (Host): And what about power of attorney.

Dr Danielle Noreika: So, power of attorney is, a difficult concept sometimes because it leads to a lot of confusion, I think, when, well-meaning family members are coming in with paperwork and not exactly sure what they have. So, a power of attorney, broadly in law, are folks who are able to act on your behalf in a certain circumstance.

And the reason it's important to be aware of this is that if you have a medical power of attorney, that person is allowed to come in if you can't make your own medical decisions and make those decisions for you. But there are other forms of powers of attorney. For instance, you could have a financial power of attorney and some families will come in with that paperwork (the financial power of attorney) and think that allows them to make medical decisions for that person, but that's actually a different form. So, one thing we really try to advise everyone is to be very aware of what the forms that you have are labeled and what they allow you to do and don't allow you to do. And that way patients can be very clear when they're appointing powers of attorney and what they really expect that person to do. Is that person really just focused on helping manage their finances if they can't, or is that person going to have a financial power of attorney and a medical power of attorney and help make medical decisions? It can be the same person, but you do need more than one form at times to accomplish that.

Maggie McKay (Host): and that's for when you're not capable of managing your property or your business affairs? Correct.

Dr Danielle Noreika: You are correct.

Maggie McKay (Host): When is an advanced directive activated?

Dr Danielle Noreika: So advanced directives are forms that we have that we don't use at all while you are able to make your own decisions. So, if you are in our hospital and you are fully alert and able to hear your medical information and participate in your medical decision by thinking through those decisions, we would not use that form at all.

It would just be in the background. We would have it to reference if we needed it in the future. If, however, something happened where you were not able to be awake. So, for instance, if you were in the intensive care unit and you were on a breathing machine, and you were in a state where you couldn't respond or you had a head injury per se, and you were very confused. Those would be circumstances where the providers who are caring for you may decide that you are not, at least at that time, able to think through the medical decisions that we need to make, and then we would use that form to reach out to your medical decision maker and have that form as a guide to medical decisions.

There are times where it can be difficult to tell if a person is able to make those decisions, and in those instances, often the primary provider for that patient will actually ask for other colleagues to come in and help make that assessment. The other thing to know about, what we call capacity or your ability to make those decisions is that it can change and we are always evaluating.

So, if you happen to be on the breathing machine in the ICU and you can't make decisions right now, if four days from now you come off that ventilator (the breathing machine) and you're awake and you're aware, then you go right back to making your medical decisions. We only use that form when you are in states where you cannot make those decisions with us, and then we know we have that documentation to lean on as well as the decision maker that you've appointed.

Maggie McKay (Host): How often do physicians reevaluate this?

Dr Danielle Noreika: So, the document itself, is active until it is updated or changed, or a patient decides that it's no longer valid and rescinds it. So, these documents can be valid for number of years. We do encourage everyone who has a document like this to at least probably yearly pull that out and make sure that everything on there is still accurate, that nothing has changed. What's important in the decision making and certainly that the people who are appointed to make decisions and their contact information is up to date and current. That gives us a good timeframe of making sure that we don't have a document that is from prior years that may not have the accurate information that we need in an emergency.

Maggie McKay (Host): Dr. Noreika, who should have a copy and where do you keep it? So, you have it when you need it?

Dr Danielle Noreika: So, copies as we're mentioning here, are legally valid and we want them to be easily accessible. We at a baseline minimum recommendation really need your decision makers to have these forms easily available. If you think about it, if you're ever in an accident or something happens emergently, those decision makers might have to come in with that form so that medical team knows that they can involve them in your medical care and decision making.

So, it's very, very important that those folks have not only a copy of it but also the most up-to-date copy of it. So, when you update them, remember anyone who has these forms, you have to update them also. It is also helpful at times to put them in places where if there's an emergency, there are going to be folks looking in certain places for this documentation.

So, there are certainly patients in our digital age, this information is in their phone so there's easy access potentially in the hospital setting without having to run home and dig through paperwork, or in a glove compartment if there were an accident. There are also folks who have connections to either certain clinics or even hospitals and medical facilities because they have complicated medical backgrounds--it is often helpful for those health systems and clinics to have those documents on file. So, if you come in an emergency and you cannot answer questions for us, we can access that information that we previously discussed and we have on file.

Maggie McKay (Host): Dr. Noreika, what are some general pointers you would tell our listeners? Things that we should know? Just the basics.

Dr Danielle Noreika: So, I think the most important part is building up the courage to have that conversation. The form is something we focus on a lot. But what we really want to have folks do is reflect on what's important to them, what needs to be present as far as quality of life in order for that person to want to go through what can be very difficult medical therapies, and really to have an honest conversation with their decision makers about what that looks like.

And when you've gotten to a place where you can do that and have that conversation as the basis, it becomes really straightforward to actually fill out that form. So, I think we are realizing here that approaching this thoughtfully and really thinking about what's important to you and talking to your loved ones or decision makers is really sometimes the barrier that's a little difficult to get over, but we encourage you to do it. And then the form flows really easily after that is done. When you are able to do these things, I will reflect back to you as someone who works in the hospital and has for decades, that families who are able to lean on these documents and conversations in making decisions are so relieved that they know from their loved one what they would have wanted. The ability to stand in that ICU, even when there's a whole lot going on that's very difficult to deal with emotionally, but really know that they truly have a sense of what that person, that patient in the bed would want is a gift that I really honestly can't describe, and that is direct feedback from the families that I've cared for over the years.

Maggie McKay (Host): Absolutely. And One thing I learned the hard way. If you are having a lawyer do this, say with all your other legal documents, you should read this and talk with your spouse or whoever's going to be doing it, on your behalf before you're in the office, because we hadn't discussed it beforehand.

And so, the lawyer's like, well, what do you want to do about this and this and this? And then the form. And I thought, boy, we should have had this conversation before we were writing it down with a third party.

Dr Danielle Noreika: I hear you on that, and I thank you for sharing that anecdote. Because life is busy and these things are difficult to think about, and it's not until you sit down and really try to be honest and reflect on this, that it comes to mind that it is really difficult to do these things. So, thank you for bringing that forward.

And I think that acknowledgement allows all of us to plan a little better how we might be able to overcome those barriers where it is difficult to think about these things and get to a place where we can have these plans made.

Maggie McKay (Host): Dr. Noreika, can you tell us a little bit more about durable DNR, specifically in Virginia?

Dr Danielle Noreika: The durable DNR, and then there's another form that is related to it called a POST Form (stands for Physician Order for Scope of Treatment) which are direct provider orders that allow patients who may want limitations to some forms of medical care to describe that and have a provider sign an order that has to be followed in every medical facility in Virginia.

So, this allows folks who may be elderly and frail or may have an underlying illness that we can't cure, who may want certain types of medical treatments, but maybe not others, to clearly have that in writing and ordered. And that is then a portable order form that goes with them to any healthcare institution, which includes hospitals, which includes nursing facilities, emergency departments and others. So, I think for certain patient populations, those are both tools that can be used when that advanced directive we've talked about may not be specific or concrete enough to allow those sort of quick decisions to be made. Those advance directive forms are really directed towards future states that we can't predict and giving us an idea of what that person might want in that situation, whereas the two forms that our provider orders are really concrete about applying to the circumstance that we know of that we're in now.

Maggie McKay (Host): And do patients have to bring these forms into the hospital every time they go? Because just as an example, elderly people, sometimes they're in and out of the hospital a lot.

Dr Danielle Noreika: It’s always our recommendation to have the form available. If we're going to integrate it into your treatment, we really need to be able to see it and know exactly what those decisions were. We spoke earlier that if you have an advance directive, that it's really helpful to have it on file at the hospital and clinics where you get your care.

Even though when you have it on file, having it on your person just in case to verify is always helpful and always makes it easier for your healthcare team to be able to look at the form themselves and be sure that we're providing the healthcare that lines up to those orders.

Maggie McKay (Host): Dr. Noreika, thank you so much for walking us through this. It's a critical process that hopefully people do sooner than later. Daunting as it seems, you have put it in perspective, and pretty much given us a better understanding of what needs to be done when planning advance care. So, thank you so much.

Dr Danielle Noreika: Appreciate the time today. Thanks for having me.

Maggie McKay (Host): To find out more, please visit vcuhealth.org and search advance care planning. To listen to other podcasts from VCU Health, visit vcuhealth.org/podcast. This is Healthy with VCU Health. I'm Maggie McKay. Be well.