Not a 'Death Panel': Call it 'Quality of Life'

Arthur Caplan, PhD


February 03, 2011

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I'm Art Caplan from the Center of Bioethics at the University of Pennsylvania. Today I'd like to talk to you a little bit about end-of-life care planning. This has been a very controversial issue. At first, the Obama health reform included financial incentives for doctors to talk with their patients about end-of-life care planning, but it has been withdrawn from legislation because there has been pushback. Some people are arguing that this is a kind of rationing or almost a form of death panel discussion where you're trying to persuade people not to use medical resources.

I happen to think that that's wrong, and that having these discussions with patients is crucial. I think primary care people have to do it and they should be part of the discussion with specialists when you're talking to any patient. It should be routine. Why is it so important? It's not because we're trying to save money with end-of-life care discussions. What we're trying to do is let people have control over their care if they can't communicate, become disabled, or if they're in a situation where their illness really makes it impossible for them to trust that they're competent.

The crucial thing is protecting people's right to choose the kind of care they want. They may choose to have a lot of care. They may choose to have a little care. But whatever they do choose, if we don't have that discussion early and we don't get them thinking about this topic (which is admittedly hard to talk about), they're not going to be ready when the time comes. It makes for a terrible problem in terms of giving them care when they can't communicate. It's often unclear who we should turn to for taking charge of the situation. It's not even clear who should be the person who is in charge of making decisions when the patient can't do so.

So what sorts of things are important in end-of-life care discussions? The most important thing is having the patient identify who it is that they want to speak for them. We call that surrogate decision making. You may assume that if the patient is there and married, that the spouse is going to do it. Well, most of the time that's true, but there are situations in which the person says, "I don't want my spouse to do this." They can't handle it or they're going to be too emotional or they have someone else that they'd rather have do this. You can't just assume that a married couple is going to pick their spouse.

There are other situations in which people are living with someone, but they may not be married. They don't have legal status unless that patient picks them as the decision maker. They have to realize that, if it's a gay couple or a common law situation, they have to write down that they want their live-in partner to make decisions for them. Obviously, there are situations in which an older patient may have many children. They have to designate someone to be the decision maker, and it's important to get them to pick a particular person.

Another key thing is to try to let people know that they have the right to choose a lot of care or a little care, and to try to get some general sense of where they want to be. Are they willing to try to do whatever it takes to live longer? If they become incapacitated and it's unlikely that they'll recover, do they want a lot of pain control and palliative care? What's the general goal as they see it for healthcare if they get into dire circumstances? That's important because we don't really want them trying to make up a menu or a recipe; it scares them and it's not that useful to us. But having that overall picture of their general values is the most important information you can get.

So remember: who is the decision maker and what is the overall goal of healthcare if things are going to be tough and they get into dire straits? That makes that conversation go much, much easier, and it's a conversation you should have. I'm Art Caplan. Thanks for watching.


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