Family Conversations About End-Of-Life Care

MS. DIANE REHM

11:06:56
Thanks for joining us. I'm Diane Rehm. In this hour, a frank conversation about a difficult task, talking with loved ones about end-of-life planning. Joining me in the studio, three experts to offer practical advice to make that job less traumatic, clinical psychologist Janis Abrahms Spring, Sue Belanger of Georgetown University, and Charles Sabatino with the American Bar Association. Do join us, 800-433-8850, send us your email to drshow@wamu.org, you can follow us on Facebook or Twitter. Good morning to all of you.

GROUP

11:07:43
Good morning.

REHM

11:07:44
Good to have you here. Charles Sabatino, it seems to me that before we even think about beginning a conversation like this, we need to have the information we ought to have in front of us. Where do we get that?

MR. CHARLES SABATINO

11:08:03
Well, there's many places you can find that. In your own state you can start with either a state bar association website, an office on aging website, or our own website at the ABA Commission on Law and Aging has a long resource list of materials, not only to point you to the right kind of legal documents, but I think more importantly pointing you to the need to have a guided discussion around these issues before you start signing legal documents.

REHM

11:08:34
I think that's good advice. Just to point out, we have a great many links on our website, for example, Aging with Dignities Five Wishes website, we have the American Health Lawyers Association Guide to Legal Issues in Life Limiting Conditions. We have a number of them, and you can find them our website drshow.org. Turning to you, Janis Abrahms Smith (sic) , it's never easy to talk about death and dying. When do you think -- how do you think people can begin?

DR. JANIS ABRAHMS SPRING

11:09:28
Well, I think the fact is that people don't have these conversations. We think about death and dying, we think about the elderly, but everyone is born and everyone dies. And even in this room, we'd have to look around and say how -- and these, you know, we're all experts in this I suppose, how many of us have really spelled out in detail -- how many people who are listening on the show have really spelled out in detail their wishes? And it is such a sticky, uncomfortable, morbid topic.

DR. JANIS ABRAHMS SPRING

11:10:02
We think about the elderly, but everyone at this age -- everyone at all ages can think about this and begin these conversations, but they don't. They don't talk to their children, and doctors don't talk to patients, and nobody's talking about it.

REHM

11:10:18
So long before people reach the bed and the bedside, these conversations should be taking place.

SPRING

11:10:30
Well, they should. They should. But, you know, of course, the question is why don't people talk about it, and there are good reasons. I've had one patient who went to her dad, elderly dad, and said, dad, you know, would you like to talk about your wishes? He says, what, you want to get rid of me? So those kinds of reactions don't encourage dialogue. Or I had another patient tell me that her doctor talked to her mother about her Alzheimer's and she was very angry at the doctor for beginning these conversations because the mother became clinically depressed and withdrew, and she blamed the doctor for being insensitive to the mother for having these conversations.

REHM

11:11:13
Wow.

SPRING

11:11:14
So you see how complicated, yes.

REHM

11:11:15
Of course. Turning to you, Sue Belanger. I know you're a clinical ethicist, you're director of education, training, and research at Sibley Hospital here in Washington. You're both an R.N. and a Ph.D. What do you do if you hear that kind of, well, what do you want to do, get rid of me? What do you do with that?

DR. SUE BELANGER

11:11:44
I think you need to let people know that in fact, no, we don't want to get rid of you. But it's very important that you maintain your decision making about what's right for you. And part of that means talking about what's right for you at any point along the health care continuum when you might need something. And so if you don't know what your options are, you may now know what's right for you, and really, you don't want other people to make decisions for you that don't know you, the person, what your values are, or what your wishes are.

REHM

11:12:21
So long before you find yourself in need, you need to begin the conversation, but as we've just heard from Janis, there are an awful lot of people, perhaps even in this room, though I must say I am not one of them who has not had the conversation, it does seem to me that the earlier the better, in greater health rather than in sickness.

BELANGER

11:12:54
Absolutely. One of the things I tell people all the time is end-of-life conversations are really not for end of life. They are for long before that time comes, and it's really important that at any time if there's a situation where someone you really admire, an actor, dies prematurely, it's an opportunity to talk about how that situation might relate to you. If a parent or a friend -- a 30-year-old may have a friend who dies in an accident. It's a perfect opportunity for that person to begin that conversation. What would you want if that situation was to occur for you? Any time is a good time.

REHM

11:13:41
Any time is a good time. And we're trying to find the right time for you. Charles Sabatino, is there a right time?

SABATINO

11:13:56
Well, from age 18, there's a right time. We tell -- I use a little mnemonic to remind people when they ought to revisit -- that assumes they visited this topic in the first place, but once you have sat down, had these conversations done in and advanced directive, it doesn't end there. I suggest that whenever any of the five Ds occur you have this again, the first D being a decade of your life. If nothing has happened in the last decade, it's time to sit down again. A death of a loved one, a divorce, and new and serious diagnosis, or a significant decline in a condition.

SABATINO

11:14:33
Any of the five Ds, those are times to sit down and rethink, okay, do I -- where am I on this? We do know that people -- the truth is that people are very ambivalent about dying, and we have created these advanced directives as if the only problem is people need a way of communicating their wishes. A lot of people don't do this because they aren't quite sure what their wishes are, and that's perfectly normal and fine.

SABATINO

11:15:00
Having the conversation in a structured way can help people figure out things that they are more certain about or less certain about, and it's okay to redraw the line as you move on in a condition. Many people do. So it's a continuing conversation.

REHM

11:15:15
Janis, Abrahms Spring, you've written a book titled "Life with Pop: Lessons on Caring for an Aging Parent." I assume you went through this personally.

SPRING

11:15:31
I did. It's basically after my mother died, I inherited my dad and I watched over his care until he died from complications of Parkinsons five years later, and I weaved together my patients' confessions with my own confessions, everything that went through that. My dad never talked about death and dying, and we never expected him to outlive my mother because he had so many health problems, but he did.

SPRING

11:16:00
And, you know, I describe a passage in the book where we go to visit a friend of his who's blanched from Alzheimer's, and, you know, the man is strapped to a wheelchair staring at a TV, and I thought this is a great time to begin this end-of-life conversation. So we go out to breakfast, we're sitting outside, and I say to my dad, so dad, do you ever think about dying? And he looked at me, and he said, no. And I try to keep the ball in the air, and I say, I think about it all the time, because I had no clue what he wanted me to do.

SPRING

11:16:36
I said, I think about it all the time, and I wait for him, and he looks down at this breakfast and he says to me, isn't this a great bagel?

REHM

11:16:46
Oh, wow.

SPRING

11:16:46
And I thought to myself, you know what, it is a great bagel, and he can sit out here in the sunshine and pick up this monster and stuff it into his face with his own two hands, and he's not strapped to the wheelchair in a nursing home, so why talk about dying now, and I just let it go. And that was a lovely moment, but I never knew what he wanted me to do.

REHM

11:17:07
So Sue Belanger, what would you have said to Janis?

BELANGER

11:17:13
I think it's important to ask the question, and if the moment is not right to wait until there is a better moment. Sometimes it's okay for the family to react and say, this is a great bagel. You know that's your cue that this conversation is over for now, but it's also something that you need to think about in terms of the next conversation. When's the next in you might have to ask the question again. When's the next moment when it might be right to say, dad, I know this is difficult for you, but it really is very important information for me.

REHM

11:17:55
And perhaps one could argue that to have had the conversation much earlier might have been easier. Do you believe that?

BELANGER

11:18:11
I do believe that, but one of the caveats to that is sometimes once we are diagnosed with an illness, a grave illness, what we think about changes, and how we maybe see our lives change. So perhaps when we're perfectly well we think I don't want it this way, but perhaps later on that may change for us.

REHM

11:18:34
Sue Belanger. She's a clinical ethicist, professor at Georgetown University. Short break here. We'll be right back.

REHM

11:20:04
And we've had a number of emails about the Five Wishes web site. This from Jay who says, "I'm only 61 years old, but have used the Five Wishes to outline in detail what my family needs to know about my final wishes. It's a relatively simple way to do so. My doctor has a copy in my records as does the local medical surgeon and hospital. My adult children and my wife all have copies. And once we discussed it I think we all felt a sense of closeness and relief knowing it was done. I highly recommend using the five wishes." Now has Jay done what he should have done here, Charles, to cover his options?

SABATINO

11:21:11
I think he has because Five Wishes is an unusual form that has been developed to meet the legal requirements in the great majority of states, not every state. And by way of full disclosure I have consulted for Five Wishes to help them reach that level. And it's -- many people love the form but one of the points I'd like to make is that everybody approaches this in a slightly different way, sometimes a radically different way.

REHM

11:21:39
Of course, yes.

SABATINO

11:21:40
And our philosophy is to try to give people as many avenues to getting to the point they need to get as possible. If Five Wishes appeals to you than by all means use it. If other workbooks or advanced directives that help you do advanced care planning appeal to you, use them. Look around. There are now a lot of resources out there.

REHM

11:22:03
Sue.

BELANGER

11:22:04
Yes, there is a document available on the web for those people who really want to outline any one of the numbers -- full numbers of options. This one is called Your Life Your Choices and consists of a 53-page document. That's for that person who really, really wants to outline every possibility. On the other hand there are Caring Conversations book written by the Center for Practical Bioethics from Missouri that gives very nice clear detailed information about how to go through this process.

BELANGER

11:22:40
And there's another called Go Wish, which is actually a set of cards. You get a deck of cards for you and for your loved one who might have to make decisions for you. And both of you rate certain phrases on three levels. Basically is this very important, is this somewhat important, is this not important at all? And then you compare those and that helps being that conversation.

REHM

11:23:07
We have an email which says, "We're dealing with a terminal family member who refuses to have these conversations because she believes that they would prevent a miracle or contradict hope. How do we deal with that mindset?" Sue.

BELANGER

11:23:35
That's a very difficult situation to deal with because that's a sign that this person does not want to give up any type of hope in their life. And yet you want that person to really be able to die with dignity and die in a way that's very important to them. So that is one of the more difficult situations that families need to deal with but again, finding any way to come into the conversation for even parts of the conversation that need to be had, pain, comfort.

REHM

11:24:13
Janis.

SPRING

11:24:14
It may be helpful for people to realize that when they have these conversations it is an act of kindness to their family. I don't think my father really understood, and I had no way of anticipating that, that I would be put in a position of not knowing whether he wanted to live or die. And if he had thought of that, that it takes the morbidity out of the situation for the survivors and gives clear direction. It's really a supreme kindness to do that.

REHM

11:24:45
So what happened with your father? Did you ever revisit the conversation?

SPRING

11:24:52
Well, what happened was at some point with the Parkinson's he couldn't swallow his own saliva. He developed pneumonia. He needed a feeding tube. And the doctors went in and asked him if he wanted a feeding tube and he said no. But I don't think anyone said to him, not the doctors, not the social workers, not me the clinical psychologist, not my brother, no one mentioned the D word because nobody talks about it. I don't believe anyone said to my father, if you don't get the feeding tube you're going to die.

SPRING

11:25:28
So when they go in they ask, do you want a feeding tube, my dad says no. And so I went in the next day. The doctor calls me and said, your father refused the feeding tube. Well, I don't know that my father really understood. So I went in the next morning and I said, yeah we have to have a serious conversation. He said, I know. And I said, you know you need a feeding tube and we talked about it. And I said, do you understand, he said, I do. And he looked at me and said, for how long?

REHM

11:25:56
So...

SPRING

11:25:56
And I said to him, forever, Dad. You need a feeding tube forever. So he said, can I think about it? I said, yes and I went out and had a hot dog from the stand outdoors. When I came back he had slipped into unconsciousness. And so the hospital staff met with me and suggested that he would always develop pneumonia. He would -- there'd be frequent hospitalizations. He was unconscious at that point and so we let him go. So the conversation never happened.

SPRING

11:26:26
But the point I want to make here is that nobody talks about it, not even the doctors. And never mind how complicated it is for family members.

REHM

11:26:36
And Charles Sabatino, the question becomes when is there almost a legal responsibility for the doctor to present truthfully, honestly the options. I mean, the doctor or the nurse simply said, do you want a feeding tube? I mean, what does that tell us?

SABATINO

11:27:03
It's very unfortunate. The health care providers do have an obligation to obtain what's called informed consent for decisions, particularly important decisions like this. And that includes describing what the alternatives are, what the benefits and burdens of each of the alternatives are. What it means if you don't get a feeding tube and what it means if you do get a feeding tube. At that stage a feeding tube may not have done a bit of good and it may have been -- created a lot more suffering than benefit.

SABATINO

11:27:36
But unfortunately those kinds of discussions in the rush of medicine today often take place inadequately if at all.

REHM

11:27:45
So, Sue, what is your role in perhaps dealing with patients, dealing with the doctors? How can you be of help?

BELANGER

11:27:57
One of the important things at least is to begin the conversation with the doctor to say please disclose all the risks and benefits in an honest way with all the people that are involved in the situation, including the patient and the family. It's very important for family members to really understand what they're dealing with, not just in the immediate situation but long term. What does it mean to have a feeding tube long term? How does that impact this particular patient, my mother, my father who's lying here in the bed? So that's, you know, very important.

BELANGER

11:28:35
On the patient's side, as much information as we can give the patient is really important. That's why beginning the conversation early, doing your homework ahead of time so that you know when it comes time that I'm debilitated and I can't do anymore, do I really want that feeding tube? Does that make sense for who I am and what's important to me? And so, again that's sort of advanced care planning long before we need it. But honesty is very important.

BELANGER

11:29:03
Clinical ethics consultations for many people are a way to have someone who's unbiased and unrelated to the care come in and offer an objective point of view. In that conversation we bring everyone that's involved to allow family members to make the best decision that they can.

REHM

11:29:21
Janis, do you think your father would have preferred to die at home?

SPRING

11:29:29
Well, he wasn't at home at that point. He was in an independent living facility and they wouldn't allow him to be there.

REHM

11:29:34
I see. I see.

BELANGER

11:29:36
Why are you asking? What are you thinking?

REHM

11:29:38
Because I'm just wondering whether that's one of the questions that people would want to make sure to ask, where would you prefer to die?

SPRING

11:29:51
I think a lot of people want control over their decisions. It's interesting. I was going to a wedding the other day and somehow we got into a conversation and the person who is a doctor sitting next to me said, I'm hoarding pills because when I want to go I want to go. And I don't want any legal or medical person making these decisions for me.

SPRING

11:30:15
And I went into the wedding, I sat down next to the grandmother of the bride and I said to her, how old are you and she said, I'm 93. I said, oh my god, you look so great. She says, I do look great now but I'm not going to be great forever. And let me tell you, when it's time for me to go I want to have control over that. I said, really. What are you doing about that? She said, I'm hoarding pills. This is a conversation that took place within ten minutes of each other. It's on people's minds.

REHM

11:30:44
Clearly on people's minds. And clearly there's pill hoarding going on, Sue. We've got lots of callers. I'm going to open the phones here, 800-433-8850. First to Hilda in East Lansing, Mich. Good morning, you're on the air.

HILDA

11:31:08
Hi, Diane. I am a bioethicist and I've had to think about end of life care for a really long time. And one of the things that I've noticed is that most of the discussion goes around decision making. And often that's not really what is on the person's mind who is the actual patient in that situation. They're not so much interested in making decisions, because they don't know what they want. I think Charlie Sabatino pointed that out earlier.

HILDA

11:31:36
But what they might want -- and many of them seem to -- is they want someone near and dear to them to act not for them but as them. That is to think for them, to make the decisions, to feel through what that situation is because they're sick and many of them are frankly busy dying. And they don't need to be bothered with that kind of thing. Now this is not true for everyone. Lots of people want control.

REHM

11:32:06
Sure.

HILDA

11:32:06
But there are plenty people who don't.

REHM

11:32:09
Interesting. What do you think, Charlie?

SABATINO

11:32:13
Well, like I said earlier, people approach this very differently. Some people control is very important. Others want to be cared and want the family members to make decisions. And that's one reason why it's important to have named a health care agent using a health care power of attorney. I mean, that is really the -- I tell people that there are three questions you've got to answer.

SABATINO

11:32:35
One, who do you want to speak for you when you can't. Two, what guidance do you want to give them and anybody else involved? And then three, how are you going to communicate that? Are you going to use a legal document, you going to use conversations? There are a lot of ways to communicate it. But to name a health care agent you do have to use the right legal document.

REHM

11:32:54
Charles Sabatino. He's director of the Commission on Law and Aging at the American Bar Association. And you're listening to "The Diane Rehm Show." You know, Janis, going back to your story about encountering two people at the same wedding within ten minutes of each other, I think the issue has become more and more on people's minds as we see people living longer ending up in nursing homes, perhaps in front of television sets, simply living, simply existing. And I think that accounts for a great many people saying, I'm hoarding pills. I'm going to make sure that I take care of myself when that times comes.

REHM

11:33:59
But of course that time may have come beyond the point when someone can do to him or herself what they want, Sue.

BELANGER

11:34:14
Absolutely. I think medicine has allowed us to keep people alive for a very, very long time. Pacemakers and medications and many interventions that allow people to live much longer than anyone ever thought they could. And so unfortunately what also happens is we decline overtime. And so as we decline we never get back to that previous state. We go into the hospital, we come out, we're weaker. We're never back to where we were before. And so there -- we wake up one day and we're beyond the point where we ever wanted to be. And so...

REHM

11:34:54
And here's a perfect example of that. Maryann in Peoria, Ill., you're on the air.

MARYANN

11:35:03
Thank you. My issue is sort of bordered on that. My mother had Alzheimer's and I knew from years past what she generally wanted, but when I tried to get her to talk about death and dying she seemed so frightened. And I finally made the choice that she really didn't want to have to make that decision. She couldn't even decide on appropriate clothing to wear by that time. And, like I said, she seemed afraid of the decision besides not really having the capability to do it.

MARYANN

11:35:41
But the panel seems to think that you should push people to make this decision and I was just wondering how do you decide which side of the line to go on, whether to relieve them of a burden of decision or push them -- enable them to make a decision of their own?

REHM

11:36:00
Good question, Janis.

SPRING

11:36:01
Well, you know, again as I mentioned with my dad, he was telling me, I don't want to talk about this. And certainly I think people have the right to say that to their families. He -- it was his personality. And so that's how the mess evolved. But it was his wish not to discuss death and dying.

REHM

11:36:25
Charles.

SABATINO

11:36:27
Well, you know, I think the question of how do you want to die is the wrong question. It's really how do you want to live? We don't know what the timing of our death is going to be and I can understand not wanting to talk about it. But your father knew he didn't want a feeding tube. That was his quality of life -- that was a quality of life decision about how he wanted to live right now.

SABATINO

11:36:47
So many people can talk about these issues and avoid the D word in many ways and still you can make progress.

REHM

11:36:57
You know, we're faced with the question of power of attorney. We're faced with who's going to make these decisions if, for example, we're single or widowed or an only child, you know. And we're confronted with these decisions at a terrible time if someone is dying. So our conversation here this morning is really intended to get you to think about these issues now. We're going to take a short break. We'll be right back.

REHM

11:40:04
And welcome back. We're going to go right back to the phones to Valdosta, Ga. Good morning, John, you're on the air.

JOHN

11:40:16
Good morning. It's a pleasure to talk with you.

REHM

11:40:17
Thank you, sir.

JOHN

11:40:19
Mine is the email you read earlier about the five wishes. But I wanted to just add one thing. A lot of conversation has been made about, you know, people not wanting to talk about their own death. In my case, my adult children didn't want to talk about mine. And the five wishes just turned out be a really good protocol to just walk them through the very details of how I would want to be treated at the hospital or at home or so forth. And it really made a lot of difference. I mean, it -- as I said in the email, it's like everyone just took a breath and relaxed and said, okay, that's done.

JOHN

11:40:52
And my history is my father died when I was about 13 and over a long period of time. And we had none of that in place and it was just an agonizing thing. But I think the discussion today is well worthwhile and, again, I highly recommend that particular document because it made it so much easier for me and for my family.

REHM

11:41:10
John, thanks so much for calling. And expanding on that, Charlie, do you want to add to that?

SABATINO

11:41:19
You know, there are a number of what I call workbooks out there that give you some guidance for how to have a conversation, even give you some tactics for how to overcome resistance. You know...

REHM

11:41:31
Give me an example.

SABATINO

11:41:34
Well, you know, one of the questions, you know, dad, let's think about this. And his dad says, well, you know, you're going to make the decisions for me, you know, you know how to make them. And how do you respond to that when you really don't have guidance? You know, one of the tools that we've created in our website is called The Proxy Quiz. And it's -- and the daughter can say in that situation, well, you know, I hope I could make decisions the way you'd want them, let's give it a test. You know, if you answer these questions, and I'm going to answer them how I think you would answer them, let's compare the answers.

SABATINO

11:42:10
And they're multiple choice, very short questions. And usually people don't come anywhere close to each other. And that's an interesting amount. Why did you answer it that way and why did I answer it -- think you would've said this way? So there some, you know, tricks up your sleeve you can use to try to get those conversations going. Like I said, the first question is usually seen as the most benign one. Who do you want to be your decision maker? And people often say, well, my spouse of course or my only child of course. And that may not be the best decision maker because there are definite qualities you want in a decision maker, and not everybody has a decision maker.

REHM

11:42:48
Exactly. Sue.

BELANGER

11:42:50
My mother actually lives in the state of Maine and she has six children. And she has chosen for her decision maker, the child who lives closest to her who helps her every day. I live 600 miles away. And so whereas I might be in a very good position to help make that decision for her because of my background...

REHM

11:43:06
Because of your professional life.

BELANGER

11:43:10
...she has chosen someone who lives closer. That's her preference and that's okay.

REHM

11:43:13
Janis.

SPRING

11:43:14
Often there are sibling conflicts, and so siblings are voting differently in who gets the vote. And one of the points I make is that often the conflicts may seem to be about whether we should give mom an MRI or dad a brain scan. But they're about unresolved conflicts between the siblings or between the child and the parent. You know, mom and dad paid for your college and not mine, so now you want me to put them in this nursing home that costs twice as much, but it's not fair. Or you always need to be in control. So these -- unless the siblings address the unacknowledged subtext of their fights, they're never going to be able to go on and resolve the parent -- the questions of a parent's care.

REHM

11:44:07
And here's another perspective, Patty in St. Louis. Good morning, you're on the air.

PATTY

11:44:15
Good morning, Diane. Thank you for taking my call.

REHM

11:44:16
Surely.

PATTY

11:44:18
Mine was the cautionary tale. We did everything. We had the end of life. She made -- this is my aunt who will be 97 a week from Friday. And she made her healthcare directive in front of an attorney. We even updated it this year. The discussion was had. Everything was fine. But in December she had a emergency hospitalization and she lives in a nursing home. They send her to the hospital. I arrive with all of her directive, her list of medications, her power -- my power of attorney, everything.

PATTY

11:44:54
What did I meet? But resistance from the medical staff who in her kind of semi weak anemic state kept pushing her to override these issues and kept asking her, you don't want antibiotics, you don't want us to do invasive surgery, you don't want -- and I finally had to say, will you stop? She just got here. And it turned out to be something that did not require these emergency procedures.

REHM

11:45:24
Charlie.

SABATINO

11:45:25
Well, number one, if you're the agent in that situation, you do have the legal authority to make decisions if mom or dad can't make the decisions, and it may have borderline here. But you have to have a tough skin, you have to be able to put up with resistance against medical providers. Number two, there is a new protocol that is evolving in a number of states that addresses exactly her kind of situation. And it's called POLST or Physicians Orders for Life-Sustaining Treatment. It's a protocol that is intended to bridge that gap between, in this case, the family had the conversations, they had the...

REHM

11:46:02
Right.

SABATINO

11:46:02
...they had the forms.

REHM

11:46:03
Right.

SABATINO

11:46:04
That doesn't get into the medical plan. There's a gap there. It's not part of the -- what drives medical plans? It's doctors' orders. POLST tries to bridge that gap by requiring the conversation for people who are in an advanced stage of illness and converting it into a standardized medical plan that has -- that addresses emergencies.

REHM

11:46:26
But you've used that one word that everybody has a different interpretation of, advanced. And who is to say it's advanced or perhaps with more antibiotics or surgery or something else couldn't slow the advancement? And you get into a tug of war.

SABATINO

11:46:56
There's always something that medical technology can do...

REHM

11:47:01
Right.

SABATINO

11:47:01
...to keep an organ going. I don't think of it as licensed to any treatment. I think of it organ sustaining treatment.

REHM

11:47:06
Absolutely.

SABATINO

11:47:06
And there's a professional for each of your organs out there who's willing to keep your organ going. But when I say it advanced illness, the rule of thumb that clinicians use out there in the states that have POLST is, would you be surprised if this person were to die in the next year or so? And it's not a hard and fast diagnostic tool, but it identifies the pool of people for whom POLST is appropriate. And it's intended to prevent surprises likes this from happening.

REHM

11:47:36
And how do you make...

SABATINO

11:47:37
She shouldn't have gone to the hospital in the first place probably.

REHM

11:47:39
Exactly. How do you make sure that that PULST gets into the hands of the people who need to have it?

SABATINO

11:47:48
Well, if states to adopt this, they really have to, for the first time, make sure that all providers are on the same band wave. The provider -- it's the provider's responsibility to initiate it. It's the provider's responsibility to update it. And it's the provider's responsibility to make sure it follows the patient from A to B to C. And that's why it's a big C change because up -- with advanced directives, it's up to -- that's up to you to make sure...

REHM

11:48:15
Right, right.

SABATINO

11:48:15
...the doctor has it or the hospital has it. So it's a major C change and it's slowly evolving. And if it's done well, it'll address this kind of situation.

REHM

11:48:25
All right. To Rochester, N.Y. and to Victor. Good morning to you.

VICTOR

11:48:32
Good morning, Diane. The reverse situation sometimes arises. At our hospital we've had people in the Intensive Care Unit in the middle of the dying process who want everything done as does their family. Especially if this is the matriarch or the patriarch of the family, they want it all. And often what happens here is prolonging the dying process rather than prolonging life. A very, very difficult situation. I wonder if your panel might address that.

REHM

11:49:01
Tell me, Victor, what you as a physician would do in that situation. What might you say to those who are around the patient?

VICTOR

11:49:14
The best you can do is to advise the people that the person is in the midst of dying and that further treatment might only not be beneficial, but might actually be detrimental. The ethical perspective of do no harm means that you don't harm people while trying to do something for them. And in this case, you can actually prolong suffering by prolonging the dying process.

REHM

11:49:37
Sue, do you want to add to that?

BELANGER

11:49:39
Yes. In my experience, not only do we want to say this is not medically beneficial, but as care providers, we don't want to step into the realm where we are offering things that families want that could be harmful to a patient. So it's really totally appropriate to say to a family member this is not medically beneficial and I cannot do it ethically. And so it's okay as ethical agents for physicians to say I cannot do that for your mother, for your father because it's not the right thing for them.

REHM

11:50:13
Janis.

VICTOR

11:50:13
Sometimes the patient is competent and requests the intervention themselves.

REHM

11:50:17
Janis.

SPRING

11:50:18
And often family members are put in a position of questioning what is the loving thing to do. And sometimes the loving thing for one family member is to not intervene, and the loving thing for another family member is to do everything possible to keep that person alive. So both in the name of love, they go -- they vote in different directions.

REHM

11:50:41
Thanks for calling, Victor. Here's an email from Susan who is an MD at Case Western Reserve. She says, "I have had luck presenting this difficult decision to my family members by pointing out that if they specify what they want, they will control the process more than if we decide for them, which is an awfully good tip." Here's another, this one, "The hope issue is easier to deal with. If you help them change their definition of hope to hope for reconciliation, for pain control, for dealing with unfinished business, for a home like environment, for spending our last days in the best way possible." Let's go to Naples, Texas. Good morning, Kathleen, you're on the air.

KATHLEEN

11:51:46
Good morning. My mother is 87 years old now. More than ten years ago for Christmas one year, I researched, I found a local attorney that I knew my mother would speak to. I went to the attorney and had her make up a gift certificate for my mother to see the attorney, to do her end of life, her DNR, all the paperwork, and gave that to my mother as one of her Christmas presents.

REHM

11:52:17
How did she feel about that when she received that on Christmas day?

KATHLEEN

11:52:21
It was on Christmas day. Unfortunately, you know, we have a good relationship, but she was, you know, concerned about, oh, I need to do this, I need to do that, and, yeah, I know I need to have to. I gave her the gift certificate. It was already paid for. All she had to do was call the attorney, make an appointment. And it left all the control in my mother's hands.

REHM

11:52:46
That's a great story. Charlie, would you recommend that?

SABATINO

11:52:49
That is a great story. I like that. But I do have to caution that most attorneys that do estate planning will do these documents as part of estate planning, and there will -- it will be a perfectly legal, valid document when you're done, but it may not be what you really need, because if it lacks the conversation with the family members, you can do the document, you can sign it, but if you've never had the conversation, the odds are the document is going to fail to do what you think it's going to do.

REHM

11:53:17
Unless you've covered all the bases.

SABATINO

11:53:20
The document is only worth the discussion it's based on.

REHM

11:53:24
And you're listening to "The Diane Rehm Show." And to Sanford, N.C., good morning, Alan.

ALAN

11:53:33
Howdy, man.

REHM

11:53:34
Hi.

ALAN

11:53:35
Howdy. Well, I just have a quick question. When I deployed to the initial push for Iraq, I was only offered a will. But now I know some of my friends are getting the options for both the will and the advanced directive, even if they're single or married. And I was wondering if your guests happened to know if there was a political reason or if it just happened to be that it's due to the time -- having changed due to commonalities being -- or it being a more common operation.

SABATINO

11:54:19
I'm actually surprised to hear that because I'm familiar with Jag officers who do these regularly, and I thought that was pretty much standard practice. In fact, federal law actually creates a federal advanced directive option for those in the military. If a Jag officer does your advanced directive, it's good in any state, no matter whether it complies with state law or not, and that's a great advantage that they have. They should all be making use of that.

REHM

11:54:46
All right. And here's an email from Duane, "Your listeners need to know a power of attorney for medical and financial issues means nothing, despite having papers in hand at either terminal or soon to be terminal scenarios. The person if able to converse will always be asked if they want to "code or full code," even if they are cognitively impaired. The hospital medical personnel will follow the patient's replay at the time of being asked. Sue.

BELANGER

11:55:35
I think in many cases that's true. And when you come into the hospital, it is a requirement that we determine what you want for emergency measures. And many times the healthcare professionals don't have any documents in hand that will help guide them. And so they rely on the patient or the family members to know at that particular moment what they want to do. That is in fact if they are asked at the time of admission what they want in that particular regard.

BELANGER

11:56:03
So it's very important that whoever comes with a patient into the hospital knows what it is that they want. And unfortunately we don't always have our documents with us, so as healthcare providers, as nurses, we ask, what is it you want, what's your preference. And if you don't have the documents, we document that anyway.

REHM

11:56:24
Well, what you're saying is make sure you know where those documents are and take them with you to the hospital if you've got to go.

SABATINO

11:56:38
Diane, one of the things that people need to learn if you are a healthcare agent is what the criteria are for activating your role. In some states, you can create a healthcare agent who has authority right now, today, even if you don't lack capacity. But in most states, they only go into effect when you lack capacity and there is a procedure that must be followed on how to determine that.

REHM

11:57:02
Charles Sabatino, he's with the American Bar Association. Sue Belanger, she's director of education, training and research at Sibley Memorial Hospital. And Janis Abrahms Spring, she's a clinical psychologist, author of "Life with Pop: Lessons on Caring for an Aging Parent." Thank you all so much.

SPRING

11:57:31
Thank you.

BELANGER

11:57:31
Thank you.

SABATINO

11:57:32
Thank you.

REHM

11:57:32
And thanks for listening. I'm Diane Rehm.
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