Nat'l Healthcare Decisions Day: Are You Prepared?
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April 16, 2013 12:47 p.m.
Helen McNeal, Executive Director, Cal State University Institute of Palliative Care.
Related Story: Nat'l Healthcare Decisions Day: Are You Prepared?
CAVANAUGH: Weeks ago a story from a senior living complex in Bakersfield made national headlines. A woman collapsed and died, a health worker wouldn't perform CPR, and a woman's family who said they were sure she wouldn't have wanted to be revived. Today is national healthcare decisions day, an event that encourages people to make their own life and death decisions now in a deliberate and rational way. I'd like to welcome Helen McNeal, executive director of cal state university's institute of palliative care. Welcome to the program.
MCNEAL: Maureen, thank you. That's wonderful to be here.
CAVANAUGH: What would you say is the biggest challenge to getting people to make end of life decisions? Is it because -- I mean, is it really as simple and as weighty as the fact that we just don't want to think about dying?
MCNEAL: I think that's a lot of the reason. People don't want to talk about dying. But I also think that there's other dynamics that play into it. Aging parents don't want to make their children uncomfortable and feel that they're having -- forcing a conversation about death. And children don't want to bring it up with their aging parents because, well, I don't want you to think I'm after your money. I also think that we as providers haven't done enough to make the language of healthcare decision-making understandable and comprehensible for everyone. I like to begin the conversation with people not by talking about death. I talk about life. What gives you joy in your life? What gives your life meaning? What is it that makes you jump out of bed in the morning and then work through that conversation to a place where you can say so if you couldn't have that, what decisions would you want me to make for you? And I think it changes it. It needs to be a conversation, not death decisions.
CAVANAUGH: Okay. What's your decision now, this or is that?
[ LAUGHTER ]
CAVANAUGH: Is part of it that we don't know chadecisions we can make?
MCNEAL: We don't understand the choices. And we have framed things in very stark terms. Do you want a do not resuscitate order? Well, it's very different when that's framed as do you want to allow natural death? And I think we have to change that. And it is changing. But I think it's that difficulty with having the language and understanding also what it really means to do CPR on someone who's 90 years and frail. Unlikely, very unlikely, statistics show that they will not survive, and they will suffer more result of the CPR. So we need to understand that and have conversations with our healthcare providers so that we understand the implications of our decisions, and as an educational organization we at the institute for palliative care, and others need to do a better job of helping healthcare providers have conversations in terms that everyone can understand.
CAVANAUGH: Well, that started out with what do you love, and if you couldn't do it anymore, what would that mean, that sounds like a great way to get into this. But how specific can you get when you're making end of life or healthcare decisions? For instance, can you direct that you want to be kept alive by machines in one instance but not in another? I mean, can you get down to what they tell these days the granular level? Or is it a one size fits all with these advanced directives?
MCNEAL: No, you can get as granular as you want to get. Many people don't want to get granular, but there's a variety of tools out there for advanced decision -- healthcare decision-making. There's a tool called five wishes. If you want to get very granular, you can go to a lawyer and be very specific about the situations. On the other hand, some people just want to say, no, I do not want to be kept alive if I can't have this kind of quality of life. And there are resources out there. I know KPBS has put them up on your website. They are up on the CSU constitute for palliative care website, which is CSUpalliativecare.org, or you can go to the California coalition for compassionate care. There's a variety of places to go where you can find resources and choose the one that works for you. One of the resources I would just highlight for people who are uncomfortable is Pulitzer prize-winning author Ellen Goodman in Boston, ironically, has started something called the conversation project. And there's a wonderful conversation starter kit that is available through the conversation project. And it's a great way to start the conversation with your family or the people that are important to you in your life. It's an easy way to get into it.
CAVANAUGH: Now, when you have one of these conversations with your parents or a relative, who should be involved? I would imagine that there are some conflicts involved if indeed one child has this conversation with a parent as opposed to the entire family.
MCNEAL: I always advise people to have a conversation with all the family members around. Even grandchildren, and great grandchildren if you have them. I think it's important. The story that always tears at my heart, the story of a father who was ageing and not well, and he designated his son to be his healthcare decision-maker but had no conversation with him. Had all of his conversations with his daughter, saying now, don't let George ever put me on a machine. So the father ends up in the hospital in a situation where decisions needed to be made, the daughter was there, the doctor was there, are and the son walks in and says I'm not comfortable. And now 18 months later, the father is alive on machines.
CAVANAUGH: Which he didn't want.
MCNEAL: Which he didn't want. But he didn't have a conversation with the entire family. So I encourage people to bring together their entire family. And it's a really rich family moment particularly if you begin with the joyous things, the positive things. You have the opportunity to share love and affection. And one of the loving ways that you can care for your family is not putting the burden of decision-making on them. I think about the segments you had earlier and about what's happened in Boston, and today we have potentially hundreds of families having to make some decisions that they didn't expect 24 hours ago to ever have to make. And do they know the choices that their loved ones wanted?
CAVANAUGH: And when you have this conversation, and when you've made the decision, I would imagine that it's a very good thing not just to leave it as a spoken word, but to put something in writing.
MCNEAL: Absolutely. I actually think about healthcare decision-making in three levels. First level is the conversation. And to me, the best resource around this is the conversation project. So have that conversation so at least if something pops up, your family members know what your choices are. The second level is putting it in writing and doing an advanced directive. When you do that advanced directive, I think it's really important you also make sure that you give a copy of that to your healthcare provider. Now, if you are 18 years of age, you should have an advanced directive or at least have the conversation. Then if you're someone with a serious illness, you should probably look at having a physician's order of life sustaining treatment, which is a very specific form of advanced decision-making, which will be honored by anyone. So if you're at home, not well, you're concerned that the EMTs might come in and do something you didn't want, you can have it on your fridge, and any healthcare provider is required to honor that because is it a physician's order.
CAVANAUGH: I read that most people think this is just a great idea if you survey them. But very few people actually go and do it. Why is there this disconnect? Where when you hear stories about the story you just mentioned, one gentleman wanting a certain thing, and all of his family not know, so he's on a machine and he didn't want to be that way. We all the say, oh, that's never going to happen to me. But if you don't take the time to actually fill out the paperwork, have the conversation and make this a reality, it might happen to you.
MCNEAL: Absolutely. And I think the reason is, we're all at heart on subjects like this great procrastinators. One of the things I like to remind people is that this actually is two things. A, it's about living. Because I guarantee you, if you do an advanced directive, you have a conversation, one of the things it does is bring into crisp perspective what's important to you. What are the things that give your life joy and meaning? And there's an opportunity there for you to reprioritize some things and spend more time doing the things that give your life joy and meaning. The other thing is, are it's a gift to your family. When we're in a crisis situation, they say that our IQ drops about 30 points. So at a time when our IQ drops, we're now going to have to make a serious decision. And unfortunately those decisions often divide families. The example I used before, brother and sister aren't speaking, it's a terrible situation, a family that didn't have to be divide side now divided. So I look at what doing this is is a gift to the living. So I think we need to reframe our thinking around this and think it's not about the dying. It's about a gift to those who are living and helping them have an easier time when I may not be in a position to even care about it.
MCNEAL: But certainly I'm going to want my wishes honored. We all want our wishes honored. And you're right, the California healthcare foundation did a survey of Californians, and 83% believed it was really important to have their wishes in writing. But only 23% of them had it in writing.
CAVANAUGH: And you also recommend people who are healthy and quite young. Anybody over the age of 18 you say should have some sort of conversation, some sort of directive to the doctor and their family about how their wishes -- who they would wish for at the end of life the. But it occurs to me, doesn't that change as you get older? If you're 18 and you think life would be just terrible if you couldn't do X, it may not look that way when you're 50!
[ LAUGHTER ]
MCNEAL: Well, it's true. But I think that's a great point because we have to have that conversation often. You should redress your advanced directive as your life changes. The person who was your best friend when you were 18 you thought knew everything, or maybe your mother, now you're 40 and do you really want it to be your mother? Maybe it's your husband, maybe a best friend. So we should be to having the conversation frequently. And if we're not afraid of the conversation, then it doesn't -- it can be part of day in, day out. I like to think that all of the people in my life, my partner, my friends know what my choices are because I talk about it. Because I also don't see this as just decisions related to end of life. These are decisions about my healthcare. When I can't talk about them. They're decisions that I may recover and be able to make the next decision, but right now, I can't make it. So who do you want making that decision? Who do I trust, and what would be my guidance to them?
CAVANAUGH: Can you tell us quickly once again where people might find out more information about this?
MCNEAL: There are some great resources. Link to KPBS.org, your website. There's also links with CSUpalliativecare.org. And theconversationproject.org.
CAVANAUGH: Thank you very much.
MCNEAL: Thank you, Maureen.