Communicating Your Wishes:
A Conversation with Mary Jane Ciccarello and Jay Jacobson

Mary: In Utah, having what is called an advanced directive such as a living will can help you control how health care decisions are made. Tonight we are joined by Mary Jane Ciccarello, Legal Services Developer for the Utah Division of Aging and Adult Services, and Jay Jacobson, Project Director for the Partnership to Improve End-of-Life Care in Utah. They're here to tell us more about advanced directives and their benefits. Welcome, first of all, and thank you for being here. It's an important thing that you're doing. Advanced directives, they're really about having control. Tell me what they are, and what's available here in Utah.

Mary Jane: Sure, advanced directives are oral and written instructions that we give to our doctors, and our family, and loved ones to tell them what care, what kind of medical treatment we want when we are no longer able to communicate. In Utah, we have a living will, a special power of attorney which is a medical power of attorney, and something we usually call a medical treatment plan.

Mary: Okay, so let's talk about living wills. That's the one I think most people are familiar with. Tell me what it is, and tell me why I should have one.

Mary Jane: A living will is a written document where you say, "Look, if I'm not able to communicate, and I'm at the end of life-- I'm in a terminal condition or permanently comatose--this is the medical treatment I want." That usually indicates what treatment I don't want to have. If I don't want specific things like a ventilator or feeding tube, but it's really the care at the end of life.

Mary: Okay, so that just makes your wishes known in the event of your incapacitation.

Mary Jane: Right.

Mary: Right. Okay, so who makes those decisions? If I don't have one of those, what happens?

Mary Jane: In Utah we have laws that indicate who can make a medical treatment plan. Really, who can make a medical decision for you if you're not able to communicate, and the law says it should be the person we have appointed in the power of attorney. And if you don't have that, maybe a legal guardian. If you don't have that, it's really the family--that is, a legal spouse. You may have a parent who's going to speak for you. After that it would be your adult children who are readily available to make decisions for you in collaboration with the doctor.

Mary: Okay

Jay: Mary, we find sometimes that we can't always anticipate how each family works. And in some families, particularly among seniors, sometimes the spouse is uncomfortable making difficult decisions and may talk to an adult child. Often, we find it's a son or a daughter that's turned to by the whole family for help, and as Mary Jane pointed out the law says we should turn first to the spouse. I think it's important to say that in medical practice we try to be attentive to each family as a family group, and if the spouse says that they would rather we attended to instructions from the adult children, I think most physicians are prepared to do that.

Mary: Okay, I think that brings up a question that I think is a really important one. Having these conversations before it gets to that point is so important. To talk with your family so you don't leave them wondering what to do, and you both talked about that. Tell me, when she people start having those conversations?

Jay: It's never too early. As the program showed tonight, as people move from a state of health trying to anticipate any number of things that could happen to a particular illness where reality sets in and the decisions become very focused about things like ventilator support, feeding tubes and other kinds of treatment; we often change our minds. So the answer is for friends and loved ones, it's wonderful to say early on under what circumstances we might not want treatment, but if we become too ill to talk with our doctor about what treatments might be necessary eventually, and be very specific about those. As I said, it's never too early. It's also never too late. Those are conversations that need to keep happening as events in our life change and as our preferences change.

Mary: Yeah, because they definitely will. You know, you brought up a good point, too, when we were chatting beforehand that a lot of times spouses will think their spouse will know what they want. But you cited a good example.

Jay: Thanks so much. I think that many of us feel very comfortable that our loved ones know exactly what we want. If you've ever gotten a surprise birthday present and been disappointed you might realize that people are really not inside of our heads. And the kindest thing we may do to people who may face difficult decisions is to actually tell them what our preferences are. To have a candid conversation about that, that includes information from physicians. So they're informed choices, and I think people don't appreciate how helpful that is. Like our Partnership, the focus for us information, support and control. And if you think about that with advanced directives it works beautifully. The people who speak for us when we can't speak for ourselves need information.

Mary: Definitely, and you brought up the Partnership, and I want you to talk a little bit about that Partnership, and your role in it. You are the director, and one of your goals is to get these kinds of conversations started.

Jay: It really is. Of course, KUED is helping us to do that. Mary Jane and I think we're good examples of the Partnership. It includes people from many different disciplines. She's a lawyer, I'm a physician, and we both do many things. She also works in aging, and I work in medical ethics. Our partners come from many organizations all concerned with end-of-life care--ranging from accountants and financial planners, to attorneys, social workers, nurses, physicians, and people who provide hospice. We really are concerned with getting the conversation started, and if people visit our Web site they might even see some suggestions about how to have this conversation with a spouse, loved one, or friend.

Mary: Great. I just wanted to get back also, from a medical perspective, what sorts of things do I have control over if I'm a patient? With a living will or anything else? How far does my control go?

Mary Jane: I'll answer briefly from a legal point-of-view, and then turn it over to Jay. We have the constitutional right and the common law rights to refuse or accept any treatments we want. So, it's a total range of treatment. The important point is, we have to be able to communicate what we want, and very often when we're facing an end-of-life situation we are not able to communicate, and so it's good to have conversations. Even more than the written directives. Have conversations with family members, loved ones and doctors about what kind of treatment we think we want all things considered about our own medical situation.

Jay: I think Mary Jane puts it really well. We've had instructions from the legal system for a very long time that competent patients have the right to refuse any kind of cure at all, even if it means shortening their life. And I think that physicians have come to that conclusion. Sometimes there's difficulty refusing a treatment if a physician believes the patient doesn't really understand what they're refusing. That's a really good example of where advanced directives can be helpful. If you let your family know ahead of time exactly what you want, and in fact you are unable to competently refuse treatment, but they know that's your wish. Simply knowing that is very powerful, and the advanced directive adds some reinforcement and support to that decision, and puts you and your family back in control.

Mary: Okay, so advanced directives are legally binding, but I know a lot of people still say, "Yes, but can't the doctor still override it? Can't my family override it? What about my health care proxy? Can they override what my wishes were?" Is that how it works?

Mary Jane: If someone has completed a health care power of attorney, that is, as a competent person I say, "I want you, Mary, to make medical decisions for me when I can't communicate." Then you have the authority under Utah law to make those decisions regardless of what else has been done. Does that happen in reality? One hopes, and I think people try to be very professional and serious about these matters, and if there is an appointed agent that person tries to make the best decisions possible. Very often, we don't have the directives of any sort and so doctors have to communicate with family members who may not be in agreement. So, that's when it gets a little bit tricky. That's going to play out in each case how much one family member is going to advocate to one position, how much others are going to advocate to that position. It's very difficult, but I think that the important thing to remember is that doctors will try to communicate with whomever is around making these decisions, and more importantly, if you've made an advanced directive you're helping your family members with that very tough decision.

Mary: That's a very good point.

Jay: I think it really helps, and I think that a theme that you hear in this conversation is how important the conversation is. The document is really just a written record. Of course, it's a summary. It can never, by itself, make clear to other people all that has gone on, but the conversation can do that. It can also prevent something that no one in the audience, I'm sure, would want. That would be family members arguing over what needs to be done. There's only one solution to that, and that's a loved one making clear to close family members what their preference is. In fact, they can even anticipate this disagreement and say, "It's my choice that if there is a disagreement, I would prefer this person to resolve it." It's another conflict avoidance strategy.

Mary: See, that's such a good point to make with people.We've talked a little about the legal health care power of attorney.

Mary Jane: Yes.

Mary: Kind of a lengthy title there, which is really your proxy. Let's talk about how you might go about appointing someone to be that, and what you should look for in that person.

Mary Jane: I'll take the legal point-of-view, you can choose anyone you want. As long as that person is an adult, 18 years of age or older, and competent. It's good to choose someone who is going to be around when you need them, and it's good to choose someone who knows you. It does not have to be a relative. It really can be anyone you want, and anyone who is willing to make those decisions for you.

Jay: Mary Jane has the law correct as always, and I think it's a good reminder that people here have so much choice and the chance to exercise control. Something not often appreciated is you could ask your physician to take on that role if he or she would agree to it. You certainly could leave it with a close friend or family member. Things to think about might be: a person who can handle making a difficult decision, someone who really knows what it is you want, and that cannot happen without you telling them, and then someone who can put your interests first. One of the most difficult things at the end of life is a family member who is torn between honoring the refusal that the parent would like, and losing the parent. It's very hard to say goodbye to the parent, even when they are in very impaired circumstances. So it's often great to talk about that specific circumstance, and for the person choosing a special power to get the assurance from this person that the patient's best interests will come first.

Mary: Okay, great. I want to know why people might be reluctant to make a living will. What keeps people from doing that?

Jay: As an attorney, she's familiar with the fact that only about a quarter of people, including attorneys, have ever made testamentary wills, and we know that before the onset of serious illness, perhaps only 10 or 15 percent of people have gotten advanced directives. I think the themes are the same--we're busy, we put these things off, we really don't anticipate illness or death, and we'd rather not address it directly. Those are big barriers. I think ways of getting around those, especially for our audience, would be, if you have someone whose death you anticipate not knowing their preferences can be a huge burden to you. Letting your family members know that avoiding this discussion can cause difficulty for others, I think, is an excellent way of helping them face that tough decision because most people don't want to put their families in difficult circumstances.

Mary: Okay, and do you need an attorney to do all of this?

Mary Jane: No, you do not need an attorney to write a living will, or to execute a power of attorney. Utah law specifies forms that should be used. Substantially, those forms should be used. Those forms are available at the Partnership's Web site at www.carefordying.org. That site also refers to Utah Legal Services, which provides forms. It's helpful to have a lawyer explain your legal rights, and the proper procedure for completing the form, but you don't need a lawyer to do that. I think it's probably more important to talk to your doctor. Just sit down, and talk to your doctor.

Mary: Final question, I'm now convinced I need to do one. What do I do next?

Jay: The easy thing to do would be to contact the Utah Medical Association and ask for the forms, or to visit www.carefordying.org, where you can read both the form and statute and download it and get to work on the conversation that will tell you what to put on that page.

Mary: Okay, thank you both so much for being here this evening, we really appreciate it. If you would like more information about the Partnership to Improve End-of-Life Care in Utah, please call 888-918-4490 or visit the Web site at www.carefordying.org. For KUED, I'm Mary Dickson, and goodnight.