Melanie Cole, MS (Host): Who would make medical decisions for you if you couldn't? We're here today to explain why healthcare proxies matter, how to choose one, and the key conversations to have. Whether planning for yourself or a loved one, this discussion will help you make the most informed decisions with confidence. Welcome to Conversations with MIT Health.

I'm Melanie Cole, and we have a panel for you today with Dr. Lydia Barlow, she's a Primary Care Physician, and Jessica Senesi, she's a Nurse Practitioner and the Clinical Director of Primary Care, and they're both at MIT Health. I thank you both for joining us today, and I love this topic. It's really important, especially if you're of a certain age, that this is even more important.

So Jessica, can you start by explaining what a healthcare proxy is and why it's so important?

Jessica Senesi, ANP-BC: Yes, absolutely. A healthcare proxy is a legally binding document in which you can designate a healthcare agent. So that's a trusted individual who would be able to make decisions for you about your healthcare, if you were unable to make those decisions yourself. As I said, this is a legally binding document.

So, it's really the person who a healthcare team would defer to, to make your decisions for you, if you were unable to express them yourself.

Host: Well, it's really a great piece of paper. And as you say, it's legally binding. And Dr. Barlow, I made a comment in my intro that if you're of a certain age, but that's not really true, is it? Why should someone have a healthcare proxy, even if they're young and healthy? 

Lydia Barlow, MD: Yeah, so it's good to have it at any age. Accidents do happen and health events happen at any age, not just when you're older and you want to make sure that you think now about who you're close with and who you would trust to make decisions for you if you weren't able to make them for yourself. One great time to do it is a lot of times when people are doing their estate planning, they'll talk to their lawyer about it. That's an easy time for people to do it. However, I know a lot of people, when they're younger, aren't necessarily doing their estate planning and so they can, do this at any age.

You can actually Google Massachusetts Healthcare Proxy and there's a form right online, that you can download. And that does need to be witnessed, however, by two adults.

Jessica Senesi, ANP-BC: Yeah, and I would just add that the other thing that's important to keep in mind is that sometimes a health care proxy or a health care agent is utilized for really short term situations. So, it could actually be a pretty short illness that you're completely expected to recover from, but there's a certain period of time that you're not able to voice your own wishes and choices and the health care agent would be called upon to do that for you.

So, it is important to think about it at any age. And the health care agent really acts in a step in, step out fashion. So they will step in for you when you're not able to make the decision yourself. And then as soon as you're able to make decisions and speak for yourself again, they will step back.

Host: Jessica, what happens if someone becomes incapacitated without a proxy in place? 

Jessica Senesi, ANP-BC: So that can get a little complicated depending on the situation. So sometimes the healthcare team might have access to other types of advanced directives, like a living will. And they might be able to refer to that to help them guide treatment to a degree. But technically, in Massachusetts, the living will is not a legally binding document the way that the healthcare proxy is.

So, it can't be the sole basis for determining healthcare decisions for an individual. A treatment team will often sort of defer to the closest available family member. But this might not always be the person who you wanted to make decisions for you. Or it might not be a person who has had the discussions with you before about what your values are and what your wishes would be.

And that could create a really stressful situation for your loved one too, who's being called upon to make these really important decisions. But they don't actually know exactly what you would want or what you would desire. In some cases, things get really complicated if you have multiple family members who disagree with each other about what you would have wanted. And those situations can sometimes have to involve courts and getting legal orders about who's going to make those decisions.

Lydia Barlow, MD: Yeah, that's why the healthcare proxy is so great because you can't legally have two healthcare proxies. You can have an alternate, but in the end there's one healthcare proxy and then an alternate healthcare proxy. And that's where the healthcare proxy is so helpful because it does in the end, come down to just one person designated as the healthcare proxy.

So, if people do disagree within a family, then there is one final person to make that decision. So that's why it's really important when you're deciding who you want to be your health care proxy. It has to be someone who knows what your wishes are and is very familiar with your thoughts on health and health care and what you'd want done to your body, if you were ill. And then also very importantly, someone who is willing to carry out those wishes, especially if, say your other members of your family disagreed with them or with your decisions. So someone who would honor your wishes, even if others disagree with them.

Host: That's an important point. And Dr. Barlow, what are some of the common misconceptions about healthcare proxies as someone who's been the healthcare proxy for countless people? And still am. I know that there's always been misconceptions. People, think all kinds of things. What are some of the ones that you've heard?

Lydia Barlow, MD: So, one of the common misconceptions is that you lose your ability to make your own health care decisions once you designate a health care proxy. Which is not at all the case. This is actually an opportunity for you to, as we said, choose someone who you trust the most to make your health care decisions for you when you're not able to. The health care proxy also has a section where you can actually talk a little bit more about your wishes so that your health care team can see what your wishes are. And you can become very specific about what you want should you be unable to make your own healthcare decisions. You know, you can go into more detail about what your wishes are about your health in terms of life sustaining care. That's how the healthcare proxy often works well with the MOLST, which is the Massachusetts Order for Life Sustaining Treatment. Those two documents actually work quite well together in terms of their ability to make decisions beforehand about your health care and exactly how you would like to be cared for if you were unable to make your own decisions in the moment.

So, in a way, your health care proxy and your health care team can make sure through those documents that your wishes are being followed as closely as possible.

Jessica Senesi, ANP-BC: Yeah, I definitely see that in my practice, too. I think another common misconception I see is that people think that they need to hire a lawyer to do a health care proxy form, or that it's going to be an expensive or complicated process involving a lot of different professionals. The health care proxy form is available online. You can print it out yourself. You can fill it out yourself. You just need to have 2 adult witnesses who are not the health care proxy or alternate to sign. You don't even have to get it notarized.

Host: That's great information. Now, Jessica, when people are thinking about the person that will make these life decisions for them should they need it; what should they consider when choosing that person?

Jessica Senesi, ANP-BC: Yeah, I always say that the most important thing about choosing a health care proxy is that your health care proxy knows that they have been chosen as your health care proxy and that they know what your wishes are. I think as far as specific things to think about somebody who you trust to make decisions for you. Absolutely. Somebody who's going to be able to engage with your health care team to talk about different options for treatment and be able to for you in the case that you are not able to. Sometimes there can also be situations where other family members or friends might disagree with the decisions that the health care agent or that you, yourself have asked the health care agent to make for you.

So you really need to think about somebody who is going to be able to advocate for you and advocate for your wishes in the instance that you were not able to do that yourself.

Host: One of the most interesting things to me about being a health care proxy and choosing a health care proxy is the discussion, the nuances of the proxy itself. And Dr. Barlow, once someone has chosen that proxy, tell us about the conversations they should have with them as a physician. What specific treatments and conditions should they be discussing?

Lydia Barlow, MD: So, the discussion with the healthcare proxy is really important because in modern healthcare, there are a lot of things we can do now, in terms of prolonging life, but do you want those things? It's a big question and it's become more and more of a question over time. I think, people are kind of realizing, you know, I don't always have to do everything and you have to kind of think about the basics, which are questions about would you want to be put on a respirator?

Would you want to have a feeding tube put in if there was a likelihood that you would be able to return to a meaningful quality of life? If there was a good chance of good recovery, what would you want done? But if it looked like you would not make a recovery and healthcare could kind of keep you alive for a little while longer, but you wouldn't be awake or alert or not in pain. What would you want done? And are you okay with having your healthcare team withdraw treatment? Those are really important discussions you need to have with your healthcare proxy. And this is always a tough thing. You know, I think it's good for your loved ones, all of your loved ones to kind of know your wishes so that it's not a big shock if your wishes are not what they would necessarily have chosen for you.

So it's always good to kind of have these conversations way ahead with not just your health care proxy, but with everybody in your family who might be involved in who might be there at the hospital, say, if something happened. That being said, not everybody feels comfortable talking to their extended family about their wishes. So, it's okay to just talk to your health care proxy about your wishes for what to do if you're gravely ill, and sometimes, you can write into the health care proxy a little bit more about your wishes for your health, just to kind of help your family understand that these were your wishes, it's not just your health care proxy making decisions alone for you that you're on the same page. So that's something to think about.

Jessica Senesi, ANP-BC: I think that's really good advice, Dr. Barlow. And I would also just suggest that people have a pretty general conversation with their health care agent about what their values and wishes are. Sometimes situations can be really fluid and there can be a lot of gray area. So having that as a bit of a touchstone to know what you desire in general can be really helpful when they're making those decisions in the moment.

And even though there's only one health care agent that's activated; you can certainly let your health care agent know who else in your life could be a helpful person for them to talk to about your wishes. So you might have other friends and loved ones who also would know what your wishes are and could talk to your health care agent and be a helpful person to them.

And then on the other hand, you might have some people who would not be so helpful. And you might recommend to your health care agent that they don't engage with those people when making those decisions.

Host: Dr. Barlow, have you encountered cases where having or not having a healthcare proxy made a significant difference in patient care?

Lydia Barlow, MD: So I've seen two separate instances where multiple family members were involved in some very tough decision making in the hospital when a loved one was gravely ill. And, some very difficult decisions needed to be made. And it just really had to come down to the health care proxy and fortunately, in both of those cases, both of those patients did have a health care proxy.

And, in both of those cases, it was needed, that they did have to make those decisions, for their loved one. And, I will say, also in one of those cases, someone had written a little bit more extensively about their wishes, on the healthcare proxy and that was a situation where it helped the family kind of better understand, where the loved one's wishes were, before they had become so ill. So it was helpful. But, unfortunately, people do become very ill and decisions are made. As Jess mentioned, you know, things are fluid often in the hospital when people are really ill and decisions have to be made, sometimes very quickly and that's the wonderful thing about the healthcare proxy, about the Massachusetts Order for Life Sustaining Treatment, the MOLST, as I mentioned before. This is a time where you can think carefully well ahead of time while you're feeling well, to make plans for these situations, so in the moment, things are very clear about, who makes the decisions and what your wishes are.

Host: Jessica, I think one of the important questions here, and people get confused. There's living wills, advanced directives, healthcare proxies, there's all these different names for all these different things we're supposed to have to ensure that we get the care and that our wishes are followed. Does a healthcare proxy decision interact with other advanced directives like living wills or DNRs?

Tell us a little bit about the difference between these and how they work together, not against each other.

Jessica Senesi, ANP-BC: So all of these are meant to sort of work hand in hand with each other. So, the healthcare proxy, like, we've been discussing is really the way that you designate the person who will make the decisions for you. There are also do not resuscitate or DNR orders, we refer to them, particularly for people who have serious or terminal illnesses, they may decide at some point that should they become unresponsive, that they do not want to be resuscitated or have life sustaining treatment. And these are orders that they can sign that, will be honored in those situations.

Documents like living wills are really a way to spell out your detailed wishes about how you want your care handled. And you can really break it down into certain circumstances and treatments and interventions that you would want and not want. You can put more general beliefs in there as well. And the living will is really meant to guide the healthcare agent and the team in making those decisions.

A lot of times these situations are very stressful. They're very emotional. There's a lot going on. So really having those detailed wishes laid out, is a great way to really assist your health care agent with making those decisions. Because the health care team can really walk them through how a certain treatment might follow those wishes versus may be at odds with those wishes that you've laid out.

Lydia Barlow, MD: One thing I would say is, you just always want to make sure that the wishes are kind of along the same lines in each of those documents. So, for instance, with the DNR, which is also known as the Massachusetts Order for Life Sustaining Treatment, or the MOLST, if you say, do everything on that document, but then in your living will you say don't do anything, you want to make sure that everything is sort of generally on the same page just so there's no confusion. And opinions can change over time. So, sometimes there can be confusion over this, like, when you're a little bit younger, you say, do everything and then, you know, a decade later, when you're doing your healthcare proxy, you might have different wishes at that point. So, you just kind of want to make sure that your documents, the opinions generally match.

Host: I'd love to give you each a chance for a final thought. And Dr. Barlow, what's your advice for someone who knows they should set up a healthcare proxy, but keeps putting it off?

Lydia Barlow, MD: My best advice is to Google Massachusetts healthcare proxy, take a look at the form, as Jess mentioned, it is a lot easier to complete than you would expect and, that's a great opportunity for you to express your wishes and make sure that your wishes are honored. 

It's a pretty neat thing that we have this opportunity as patients in Massachusetts to express those wishes.

Host: And Jessica, last word to you when we think of healthcare proxies and all of the things that we've discussed here today. One of the more important things is where do you keep them? So I would like you to offer your best advice and let the listeners know where to keep all this paperwork and who to make sure has it?

Jessica Senesi, ANP-BC: Absolutely. It's one thing to put in all the work, but then if you can't find it when you need it, it's not very helpful. So it's really important that you keep a copy of your healthcare proxy form, that your healthcare proxy and your alternate healthcare proxy have the copies of the forms. And I would definitely recommend keeping one with your primary care provider, your primary healthcare team, so that they have it in an accessible accessible place. It's also good for all of these people to have a copy of any other advanced directives, like a living will. And there's a lot of great resources available online for putting this together too, particularly the Honoring Choices Group in Massachusetts has a great toolkit on their website. All the forms are in one place as well as some directions and advice for people as well.

Host: Thank you both so much for joining us. Really very important information that you gave us today and thank you again and for more information on healthcare proxies, please visit health.mit.edu/decisions to make those decisions and to help you move forward with them. That concludes this episode of conversations with MIT health.

I'm Melanie Cole. Thanks so much for joining us today.