Listen: End of life care, part 2

A Mainstreet Radio special about life and death. Host Rachel Reabe broadcasts from The Waterford, a retirement community in Fargo. In this second hour, Reabe talks with medical and legal experts about quality end-of-life care, logistics of expenses, and addressing personal affairs.

Program includes audience commentary and listener call-in.

[NOTE: Audio includes news segment]


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RACHEL REABE: You're listening to Minnesota Public Radio. It's 53 degrees at KNOW FM 91.1, Minneapolis-Saint Paul. Today's Twin Cities' weather calls for mostly cloudy skies and mild conditions. We're expecting near record high temperatures with temps in the mid 50s. Tonight, mostly cloudy with a low of 30. Tomorrow, partly cloudy skies and cooler with a high of 42 degrees.

KORVA COLEMAN: From MPR News in Washington, I'm Korva Coleman. A six-year-old girl who was shot at her Michigan elementary school today has died. A spokeswoman at Hurley Medical Center in Flint, Michigan, says the first grader died this morning after she was brought in.

Police authorities say the girl was killed by a seven-year-old boy who brought a handgun to school to show. Officers say a single shot was fired. It's not clear how the boy got the gun. He is in police custody.

Republicans are holding their primary election today in Virginia. Supporters of Arizona Senator John McCain say he has closed the gap with his rival, Texas Governor George W. Bush. Wayne Farrar of member station WCVE reports from Richmond.

WAYNE FARRAR: McCain has campaigned aggressively in an appeal to moderate and independent voters. GOP leaders, including Governor Jim Gilmore and Senator John Warner, have attempted to stop the slippage with a spirited defense of the Texas Governor.

Virginia is the second largest state to have a primary so far this year. And the increasingly close race is expected to bring out 500,000 to 700,000 voters. All registered voters are eligible but will be required to sign an unenforceable pledge not to participate in another party's nominating process.

McCain is strongest in vote-rich Washington, DC, suburbs and Hampton Roads with its many military installations. Bush's strength is in conservative Richmond suburbs, tobacco-growing Southside Virginia, and other rural areas. For MPR News, I'm Wayne Farrar in Richmond.

KORVA COLEMAN: Dogs and cats are coming to Britain. They arrived at Dover today with their own passports. A 100-year-old British law quarantining pets has been relaxed. MPR's Julie McCarthy reports from London.

JULIE MCCARTHY: A five-year-old pug named Frodo passed through immigration without incident shortly after midnight. The little black dog was the first animal to enter Britain under the new pet passport scheme that allows owners and animals to avoid the heartbreak of a six-month separation. Under the pilot program, each animal is fitted with an identity microchip vaccinated against rabies and certified against ticks at a cost of about $500.

Today's new arrivals were the result of a long campaign by owners for an alternative to quarantine, which can cost thousands of dollars and was designed 100 years ago to protect Britain from rabies. Today's critters came only from the continent. If all goes to plan, pets will be able to come from the US and Canada next year. Julie McCarthy, MPR News, London.

KORVA COLEMAN: Russian military authorities say they've seized the last major rebel stronghold in Chechnya. General Gennady Troshev says the fall of Shatoy is the end of the military offensive. Troshev says the bandits have been defeated. But lower-ranking Russian officers say fierce fighting is still underway. And they say 2,000 rebels have escaped.

On Wall Street, the Dow Jones Industrials are up 70 points at 10,109. The NASDAQ is up 91 points at 4,668. This is MPR.

SPEAKER 1: Support for MPR comes from Transparent Language, creators of Real-time translations of documents and web pages on the web at

GRETA CUNNINGHAM: With news from Minnesota Public Radio, I'm Greta Cunningham. The latest figures show Minnesota's projected budget surplus has grown by $229 million. That's over and above the $1.6 billion surplus projected earlier. Minnesota Public Radio's Mike Mulcahy reports.

MIKE MULCAHY: Ventura administration officials say the increase in the surplus is relatively modest and could evaporate if the economy slows even slightly over the next 16 months. Finance Commissioner Pam Wheelock says despite concerns about the farm sector and weaker-than-expected corporate tax collections, the state economy is on the right course.

PAM WHEELOCK: I think that this is good news in the sense that there are no surprises. The economy is still performing strong.

MIKE MULCAHY: The growing surplus is expected to sharpen the debate over cutting taxes and additional spending. House Republicans want to cut income tax rates. DFLers want to spend more money on education. And so far, Governor Ventura says he wants to save most of the money to overhaul property taxes next year. I'm Mike Mulcahy. Minnesota Public Radio at the Capitol.

GRETA CUNNINGHAM: North Dakota Republicans say they're expecting a good turnout for tonight's presidential caucuses. The state party director says the Bismarck headquarters has been swamped with calls this morning from people wanting to know where they can go to participate.

Each of North Dakota's 49 legislative districts has at least one caucus location and some larger rural districts have more than one. Republicans who attend the caucuses will decide among George W. Bush, John McCain, or Alan Keyes.

The forecast for Minnesota today calls for partly cloudy skies in Northern and Southern Minnesota, a chance for showers in the Northwest and Southeast this afternoon. It'll be mild statewide today with highs near 45 in the Northwest to 55 in the Southeast. Right now in Fargo, it's sunny and 40. In the Twin Cities, mostly sunny skies and 53. That's the news update. I'm Greta Cunningham.

SPEAKER 2: Coverage of rural issues is supported by the Blandin Foundation, committed to strengthening communities through grant making, leadership training, and convening.


RACHEL REABE: Good afternoon. And welcome to our special Mainstreet broadcast from Fargo. I'm Rachel Reabe. We're continuing our conversation on death and dying. Our show is coming to you live from one of the area's newest retirement complexes, the Waterford. We're set up in the lobby right next to one of the main dining room. Residents are on their way to and from lunch at this hour.

We're in North Dakota for today's show because this state is one of the first in the country to develop a statewide model addressing end-of-life care. The ambitious project called Matters of Life and Death represents more than 50 organizations and is working to change policies to improve the quality of dying.

Our guests this afternoon are Dr. Clayton Jensen, a retired doctor now working with the Matters of Life and Death, John Boulger, a Fargo attorney with the Wold Johnson law firm, and Dr. John Rice, Medical Director of Blue Cross Blue Shield of North Dakota. Good afternoon, gentlemen. Welcome to Mainstreet.

CLAYTON JENSEN: Good afternoon, too.

RACHEL REABE: Listeners, you can join our conversation by calling us at 1-800-537-5252. The number again, 1-800-537-5252. Dr. Jensen is part of the setup work for Matters of Life and Death. You help conduct public forums around North Dakota to identify the major challenges to improving end-of-life care. What did you find out? Was everybody saying the same things?

CLAYTON JENSEN: Actually, we did hear a lot of the same things, I guess. I was a little surprised by that but maybe not, because North Dakota is pretty homogeneous state.

RACHEL REABE: So what are the things that people are concerned about? What do they think the challenges are to improving end-of-life care.

CLAYTON JENSEN: One, I think the opportunity to talk about end-of-life issues. We found out through a series of questionnaires that we gave to almost 600 people around the state, north, south, east, west, small communities, large communities, communities with all sorts of resources, communities with very little resources.

We found that they had some real concerns. One was they didn't want anybody to lengthen their life through artificial means. In other words, they didn't want someone to prolong the act of dying, item number one.

Another thing is they did not want to die in pain, which was to be expected. The third one was that they wanted to have a voice in their death or their ultimate demise. They wanted to participate in the decision-making process.

Fourthly, some patients did not-- some people did not want to die in a home setting. They felt it would impose too great a burden on their family. And so they felt that they would like to die perhaps in a long-term care setting and some even in an acute hospital situation. But the largest majority by far preferred to die at home. And then one of the final issues that they really dwelt on was to make reconciliation with family members. And you heard much of that the first hour.

RACHEL REABE: So those were the major issues?

CLAYTON JENSEN: The major issues really resolved down to four. And that's the four that we're going to be addressing really in our implementation phase of the Robert Wood Johnson community and state partnerships to improve end-of-life care.

RACHEL REABE: So the four issues are?

CLAYTON JENSEN: Professional education. We find that health care professionals in virtually all the disciplines, nursing, medicine, social work, whatever the case might be, really haven't been given a good grounding in matters of end of life.

I, as a medical student, didn't hear anything about end of life issues or how to treat patients at the end of life. And that's quite some time ago now, granted. But I will also say that actually right now, there's very little in the curriculum of the medical schools and nursing schools that's devoted to end-of-life issues.

RACHEL REABE: So it shouldn't be a shock to us that health professionals aren't any better at beginning those conversations than we are?

CLAYTON JENSEN: Absolutely correct.

RACHEL REABE: So work needs to be done there. What else?

CLAYTON JENSEN: Very much so. Public education. This is something that might be difficult to address because people-- it's not a top 10 on the hit parade of issues to talk about. So we have to figure out some way to do the job as far as public education is concerned, to make people aware of these issues and make sure that they get addressed.

And I think we can harness the baby boomers, as Dr. Byock pointed out, who really are interested in making sure that their parents are going to face up to a good death-- correction, dying well. And I think we can enlist their aid in our job.

The third issue that we're going to have to address in the state of North Dakota is access and how are we going to pay for end-of-life care. Currently, Medicare and the insurance plans do a reasonably good job. But we are going to have to cover them for a longer period of time. Right now we really, under those plans, cover them only for six months when they're considered to be terminal. A terminal illness, by definition, is six months or less.

Then we have another major issue that we're going to have to address, in my opinion, and that's the advanced directives. We have to make our durable power of attorney for health care and our living will much, much more understandable and easier for the people to fill out and yet maintain its legality in the courts.

RACHEL REABE: So those are the main points? That's where we start the work?


RACHEL REABE: Our phone lines are open. Our number today is 1-800-537-5252 if you'd like to join this conversation. As I said before, we do have a live audience with us at the Waterford. MPR's Bob Reha is in the audience and has a question or a comment. Bob.

JOHN RICE: Yes, Susan.

SHARON: Sharon.

BOB REHA: Sharon, I'm sorry. Sharon's a certified nurse assistant here at the Waterford.

SHARON: Hi. I'm also a student at Morehead State University majoring in health services administration. The topic of death and dying mostly comes up. We talk about it openly in my family. Professor Perry Anderson had made a comment about, well, I don't know what 19-year-olds think about dying. Well, I'm 20, so--

RACHEL REABE: Sharon, what do 20-year-olds think about dying?

SHARON: My dad is really open about dying. And we talk about it. And he's like, Sharon, I've lived a good life. If I die tomorrow, I'm happy. And I want you to know that. And I think parents should openly talk to their kids about death and dying.

And as the other man had said, public needs to be more accepting of death and dying and more open to talk about it. And there is a fear about talking about it. And going into the profession and dealing with dying every day, it's going to be tough. But the more you're around it, the easier it is to accept death and dying. And you can more openly talk about it. The more experiences that you have, it's easier to talk about.

RACHEL REABE: And, Sharon, at what age do you think people need to start thinking about how they would like their death to be? Do you think you at 20 that it would just be a total waste of time to start addressing those issues? Do you think to yourself, when I'm 40, or when I'm 50, or when I'm 60, that's when I'm going to start thinking about it?

SHARON: No, I think 20 is a good age to start thinking about it because you never know. You could suddenly become ill. And I think that you should be comfortable talking about it any time. And all my grandparents have passed away. And so it's open topic. We talk about it at the dinner table. I can say at 20, I've lived a good life. So--

RACHEL REABE: And so you don't find that morbid talking about the dinner table? You find that healthy?

SHARON: Yeah, definitely.

RACHEL REABE: And is that the switch, Dr. Jensen, that we need to make in our minds?

CLAYTON JENSEN: Absolutely, no question about it.

RACHEL REABE: To bring it up as a conversation?

CLAYTON JENSEN: That's correct. You just heard this morning over the news as we were preparing for this that a young child had been shot essentially in another school situation. Death can occur any time at any age. And we really should be talking about these things.

RACHEL REABE: We go to our phone line. Sandra is standing by in New Hope. Good afternoon, Sandra. Welcome to Mainstreet.

SANDRA: Thank you for taking my call. I actually have two questions. My dad has been diagnosed with incurable cancer. And the doctors are telling him that he has months rather than years. And we, my family and I, don't know how to bring up the issue of funeral arrangements, where he wants to be buried. How do I do that? How do we go about asking him these questions if he's not accepting dying?

And then the second question is, I live with my father along with my husband and my two kids. And my oldest daughter is going to be four years old. And she has a very, very special bond with her grandfather, and so does my niece, who's three years old. And I'm wondering, how do we go about telling the kids about this? And after grandpa dies, how do we make that transitional period where we can talk to them about it and explain to them what happened?

RACHEL REABE: Good question, Sandra. Dr. Jensen, let's talk about the first part of her question, which is, how do you start the conversation? Do you start at talking about funeral arrangements, or do you start at talking about, these last few months, how do you want to spend them?

CLAYTON JENSEN: Well, from a medical standpoint, I think the doctor who is caring for that patient really has a lot of responsibility at this point to evaluate whether or not the patient truly understands what his disease process might be and what the expected prognosis, the length of life might be, and then start broaching some of those conversations with the patient directly, and then also with the patient's family and close friends, loved ones, and so forth, particularly if nothing is there that is sensitive from the standpoint of confidentiality.

RACHEL REABE: Although we started this conversation by you telling me that very few doctors and nurses have been taught how to do this. So why would they be any more adept at it than this woman would be talking to her father? If it doesn't happen, must she begin the conversation?

CLAYTON JENSEN: She must. And it's only going to happen from what we found in North Dakota in about 20% of the time because even though patients feel that they ought to talk to their doctor, 75% of them believe that, only 20% of them do. So my comment would be for the family to take the initiative if it seems that the physician who is responsible for the patient's care will not do that.

RACHEL REABE: Help this woman out. Give her an opening line. Do you start talking about the funeral, or do you start talking about how to spend these last few months?

CLAYTON JENSEN: You start talking initially about the prognosis, the illness and so that it's understood between the family and the patient that the statistics indicate that I might be dead in a period of three months or six months, whatever the case might be.

And I think that's the opening then to enlarge into the framework of discussion regarding the demise and the issues that we have to talk about prior to death, resolving these issues. It can come both from the family and from the patient. But many times, the patient's unwilling to accept it, so then it has to arise from the family.

RACHEL REABE: And, John Boulger, in your line of work, where people come into your office and they are perhaps working on a will or they're working on end-of-life matters, do you bring that up with them? Do you bring them past a will into, have you thought about end-of-life care advanced directives? Does the attorney then bring that conversation up?

JOHN BOULGER: Yes, I know I normally do. One of the terms that most people have heard is the term living will. And oftentimes I'll use that to start the conversation. I'll ask them whether they have a living will or have thought about it.

And I use that just as an introduction because there are better documents out there to cover a wider range of things than just a living will. But it is an easy way to get the conversation started. And when they're in talking about their estate plan, they've acknowledged their mortality, it's a pretty good time to bring that subject up.

RACHEL REABE: And do you find that they want to talk about it, even if you're the one who needs to bring it up? Once you open the door to that conversation, are they willing to walk through it and discuss it?

JOHN BOULGER: Yes. When I listen to people talk about it, I think they have a much greater problem getting in to talk about a will than they do once they're in there talking about a living will or a durable power of attorney for health care.

And there are occasions when I'll get a call asking if I could come over to a hospital that day because somebody has been told they have days to live and they hadn't made any preparations before that time. And so at that point, they're pretty wide open to discuss all kinds of things, even though they've put it off until the very end.

RACHEL REABE: There becomes a certain urgency then.

JOHN BOULGER: Yes, there is.

CLAYTON JENSEN: I really think that to help this specific caller out, there is something that I think might help. And Ira Byock, though he says he's not an expert in dying because he's never done it, he certainly has a great deal of knowledge and, in my opinion, has written one of the better books that I've read, which is Dying Well by Ira Byock.

And he takes a number of scenarios of people who resist death vehemently, to others who are very accepting but who have families that find difficult to accept the death and impending death. And it seems to me that that book might be very valuable for the person that called in to give her some idea as how she might approach her.

RACHEL REABE: I think that's a great suggestion. I just finished the book last night. And I found it painful. I found it very sad to read the stories. And yet I thought the information was invaluable. And there were enough. And it's all case studies but told in just a beautiful narrative. And it really gets you thinking about, how do we want to do this?

CLAYTON JENSEN: And has such a wide variety of case histories, too, that I think that almost anybody might find something applicable to them.


JOHN RICE: In regard to our caller, I think I had a couple of suggestions because I, like Dr. Jensen or at least like a lot of physicians, I'm not very comfortable talking to patients about death and dying. And so lots of times we'll not get into this with the patients very well but freely would refer people.

And I would suggest that it may be very helpful for her to get some help. And places that might readily be available would be a minister if the physician is not going to be very helpful. And I think a hospice in the local area might well also be extremely helpful just to visit, to talk to somebody about, what are we going through? How do we get started? How do we start the conversation? Even if they've not been formally referred to a hospice, I think that the hospice would be willing to listen and to sit down and to see what help they can be.

RACHEL REABE: Wonderful resources. Great ideas. Let's move on to the second part of her question, which is how to tell her children, her four-year-old daughter, her niece, four years old, three years old. Do you get them involved, or do you wait until after the person has died and then bring them into the conversation? Dr. Jensen, what's your suggestion? You've been through this.

CLAYTON JENSEN: Yes, I have and with grandchildren. And I think the most important thing is to face the issue squarely. In other words, tell the grandchildren or the children, whoever they might be and regardless of their age, the facts that your grandfather, in this case, has a terminal illness. In other words, he is not going to get well.

And then I think Dr. Rice brought up a really important point. Either contact a pastor to help out or certainly hospice. But I think that you have to sit down with the parent of the child if it were a grandchild, for instance, and walk them through the process. You can't shield them from these issues. That would be a horrible thing to do.

RACHEL REABE: Well, and as we're having this conversation, I'm thinking we want everything to be painless. What is the painless way to tell these children that they're losing their grandparent? And in Byock's book, it was unbelievably painful to read about telling the child and the child saying, mommy, don't die. I need you. How hard to have that conversation but how hard not to have it.

CLAYTON JENSEN: Well, Byock pointed out, I think, very graphically this morning that these are grief issues. These are losses that we have to work through. And it takes a combined effort of the family and all the resources that we can find to do that.

RACHEL REABE: We have Rich on the phone from Saint Paul. Good afternoon, Rich. Welcome to Mainstreet. Rich, have we got you on the line?

RICH: Sorry, can you hear me?

RACHEL REABE: You are on the air. Welcome to Mainstreet.

RICH: OK. Thank you. I'm a registered nurse. And I've worked in intensive care for a number of years now. And there have been several times when I've found myself in a position of caring for a terminally ill patient who has a living will and has specified the measures that they do and do not wish to receive.

And in several occasions, there's been the family members who there may have even been dialogue prior to arriving at this point. But here we are. And the family is just not ready to let the person go yet. We've got in writing the patient's wishes over here. I guess I'd just like to hear some dialogue about reconciling the needs of the family with the wishes of the patient and the legal force that a living will has. How enforceable is it?

I mean, I'm not saying necessarily that it's desirable to go ahead and discontinue life support or whatever in the face of a family that's not ready to let go yet. But at the same time, there needs to be-- who's representing the patient at that point? I just would be interested to hear what your--

RACHEL REABE: Good question because what we're asking is, is this the time or the place? Does anyone have the energy to get into a legal battle? When a person has signed that and they have made their preferences clear but the family either can't agree among themselves, which is one certainly very possible scenario, or they agree, but they don't agree with the person who signed the living will, then what, John?

JOHN BOULGER: Well, if the person that signed the living will is still competent, it's their wishes that are going to control as they express them at that time. If they're no longer able to make decisions for themselves and they've signed a living will and all the qualifications of the living will are met, it should be what has been stated in that living will that's followed.

Practically, I can understand where the physician working with the family is going to have some concerns and probably try to reach a consensus. I'm not a physician myself. I don't know. But generally, in a situation like that, you try to have the family discuss what it is their loved one wanted, the wishes that were expressed and see if maybe it can be brought to the point that everybody is in agreement on what should be done.

RACHEL REABE: Dr. Rice, this has to be the worst case scenario where suddenly the physician is in the middle, between the patient and the family. How do you handle that?

JOHN RICE: This is certainly a difficult situation. And I guess I've called it in the past, the syndrome of the displaced son. It seems to be a son, in my experience, most commonly, usually from far across the country. And there's a small group nearby that have been taking care of this parent.

And the son comes from far away and finds out how sick they are all of a sudden and wants everything done despite the wishes of the family and perhaps despite a durable power of attorney and a living will.

One of the things that I've found very helpful in these situations is certainly trying to talk with the family. But this can be a long, involved process. Using hospital staff, using an ethics committee that many hospitals have to try and help resolve those issues is frequently very fruitful also because you need to get down and try and get everybody on the same page.

The path of least resistance generally for the physician, at least in my experience, is to do everything. Physicians are trained to prolong life and to prevent dying. And even in spite of a living will, if there is a family member or someone there that wants everything done, physicians tend to go in that direction.

And this may certainly relate to the professional education that we have to go through. And we have to teach physicians what their role is and what the legal implications are because there are wrongful life suits as well as wrongful death suits. But physicians are generally afraid of allowing someone to die rather than allowing someone to die comfortably.

RACHEL REABE: Anything to add to that, Dr. Jensen?

CLAYTON JENSEN: Yeah, I found I had some problems, too, with what Dr. Rice described. It was someone that had been far removed from what was taking place in that clinical setting, in the family setting, would come in and certainly request that everything be done.

There was one, an element of guilt sometimes because that individual was so far removed and maybe hadn't been involved, knew what was going on. There's also a process involved and the whole act of dying and what leads up to it as a family unit and the patient and everyone else.

And I think Byock touched on that, too, this morning. It's the loss, the grief, the loss. I used to get frustrated with that situation. But that person, I finally realized, hadn't been going through the grief, the loss process.

RACHEL REABE: So they may need time to catch up?

CLAYTON JENSEN: Absolutely. They had been left out of the process and were trying to catch up desperately and in the meantime wanted everything done that could possibly be done.

RACHEL REABE: You're listening to a special Mainstreet Radio show from Fargo. I'm Rachel Reabe. And we're talking about end-of-life issues with our guest, Dr. John Rice, Medical Director of Blue Cross Blue Shield of North Dakota, Dr. Clayton Jensen, a retired doctor now working with the Matters of Life and Death, and John Boulger, a Fargo attorney with the Wold Johnson law firm. We'll be back with more of Mainstreet after news and weather.

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GRETA CUNNINGHAM: With news from Minnesota Public Radio, I'm Greta Cunningham. Three states are holding presidential contests today. But the GOP contenders are campaigning in states that vote next week. George W. Bush visited a Catholic center in Ohio. John McCain is in California.

A six-year-old girl is dead after police say she was shot by a seven-year-old classmate. It happened in a first grade class near Flint, Michigan. It's not clear if the shooting was accidental. The classmate, a boy, is reportedly in custody.

Leap day is bringing scattered computer glitches around the world today. In the US, Bell Atlantic says some caller ID devices displayed March 1 instead of February 29. And the Wisconsin Public Service Corporation in Green Bay shut down a record keeping program it knew was problematic. A Japan's weather forecasting agency monitoring stations reported double-digit rainfall even though no rainfall fell. And 1,200 ATMs shut down. Experts are dismissing the glitches as minor.

In regional news, Minnesota is projecting another budget surplus. The latest surplus is projected at $229 million. State Finance Commissioner Pam Wheelock calls the projection a modest increase over the $1.6 billion surplus announced in December. The surplus is the amount projected to be in the state treasury at the end of the current budget cycle, June 30, 2001, if revenue and spending remain stable. It's Minnesota's 16th consecutive surplus.

Anglers in Southern Minnesota have only a few hours left to get their fish houses off the ice. The deadline to remove shacks and shanties in the southern 2/3 of the state is midnight tonight. The deadline for Northern Minnesota anglers to remove their fish houses is midnight March 15.

The forecast for Minnesota calls for mild temperatures today statewide with high temperatures ranging from 45 in the Northwest to 55 in the Southeast. At this hour, International Falls reports cloudy skies and 39. It's sunny in Duluth and 54, sunny in Rochester and 54, sunny in Saint Cloud and 52. Fargo reports partly cloudy skies and 39. And in the Twin Cities, mostly sunny skies, a temperature of 57. That's a news update. I'm Greta Cunningham.

RACHEL REABE: Welcome back to this Mainstreet special on death and dying. I'm Rachel Reabe. Our guests this afternoon are helping us navigate the practical considerations surrounding the end of life. They are John Boulger, a Fargo attorney with the World Johnson law firm, Dr. John Rice, Medical Director of Blue Cross Blue Shield of North Dakota, and Dr. Clayton Jensen, a retired doctor, now working with the Matters of Life and Death.

Our phone lines are open for your questions and comments. You can call us at 1-800-537-5252. 1-800-537-5252. We go now to Ruth, who is standing by on our phone lines from Minneapolis. Good afternoon, Ruth. Welcome to Mainstreet.

RUTH: Hello. Thank you for having me on. My mother is in hospice now. And my mother also has Alzheimer's. And we'd done a lot of work when she was less confused, the kind of legal work of the living will and the health care power of attorney.

But now that she's in hospice, I guess I'm not finding many resources. And maybe there's a need for more education and research into how to help Alzheimer's patients have a good death because her intellect is still there at some levels. But her confusion makes it very hard to have any kind of conversation. And I guess I just wanted to make that point.

RACHEL REABE: Great. Thank you, Ruth. Let's address that. Our whole conversation the first hour was in the person dying, surrounded by family members, conversation back and forth. What happens, Dr. Jensen, when it becomes a one-way conversation, when you have somebody with dementia or Alzheimer's who isn't able to enter into the process of dying well? What do you suggest for the people who love them?

CLAYTON JENSEN: Well, I think perhaps one of the most important things is just to be there, to sit by the patient with Alzheimer's disease, sit by them, touch them, make sure that they have the opportunity to feel your presence there, maybe to make some arrangements for that individual to listen to music that he or she might have liked. Minnesota Public Radio has some wonderful classical music.

And do the host of things that will truly make that patient as comfortable as possible, realizing that that patient is gradually becoming more obtunded, is the term that we use, in other words, less and less aware of his or her surroundings. And the major problem then lies with the family and the deterioration of that individual before their eyes, which is terribly painful.

RACHEL REABE: In Dr. Byock's book, he talks a lot about caregivers need to provide the love and support, not even so much for the person who's dying. They need to do it for themselves. It fills a tremendous void in their experience because, again, we're talking about grieving and saying goodbye. And he talks about where the person's in a coma and still there's quite a conversation going on with that person.

CLAYTON JENSEN: Sure. You should treat that person as if he or she can hear and understand and reason everything that you're saying. In other words, the element of communication, which is terribly important, verbal, touch, whatever the case might be, comfort measures in the sense of working with the individual's hair, all those things that indicate good compassionate care and understanding and appreciation and worth of that individual, even though they're essentially nonrespinsive.

RACHEL REABE: And it may help the patient. But it most certainly will help the caregiver.

CLAYTON JENSEN: Oh man, very much so. A great deal of personal satisfaction occurs.

RACHEL REABE: Our phone number is 1-800-537-5252. We have Brent on the line on a car phone. Brent, good afternoon. Welcome to Mainstreet.

BRENT: Good afternoon. Thank you. And thank you for taking my call. I'm a 30-year-old single male. And my concerns are I would like to be able to-- I'm fairly comfortable with my own death. It's the death of people, family members and friends, around me that I tend to struggle with.

What I would like to know is if you could point me in the right direction for some resources that I could tap into to try to prepare and set up and eliminate as many questions for the surviving family members as possible so as to make the transition of my own death easier for them so that they would know what I would want, things that I would desire or not desire as far as arranging for my financial, the financial end of it after my demise and so on and so on.

RACHEL REABE: Brent, let's turn that question over to the experts. Dr. Rice, let's start with you. In terms of setting things up in advance, whether you are 30 years old, or 20 years old, or 60 years old. Let's go through the process.

JOHN RICE: Well, I think the real key here is planning. And it's communication. And I think one of the best ways to go about this is to find another family member or someone very close to you, someone that you can have these conversations with so that they can understand how you feel.

I think it's very important to have a living will and a durable power of attorney because you don't know what's going to happen to you. So I encourage that for everyone. And that gives at least a written document as a place to start from. But all of these things can be written down and could be planned for. But it's best to discuss them not only with one person but other members of the family.

He has an interesting opportunity perhaps to be kind of a leader and to set the discussion forward in his family by doing this for himself, then maybe he can develop some comfort or the other family members can develop some comfort with this and can do the same thing. So everybody knows where everyone else in the family is coming from. So I think conversation and open communication are really keys here. But it's a topic that we don't generally like to sit down and discuss.

RACHEL REABE: No, and I wouldn't be surprised if the people close to him wouldn't have to take a little while to recover from the shock. A healthy friend asked me this weekend not knowing that I was even into this death and dying mode, was I planning to speak at her funeral? And I was like, what? What? What's happened? Well, nothing.

So, I mean, it takes a while to recover from that and think, where are you coming from? Why are you bringing this up now? And then just to go on, I'm glad you brought it up. Let's talk about it. No, I'm not going to speak at your funeral. OK, go on, Dr. Jensen, your thoughts?

CLAYTON JENSEN: Yes, I would like to refer to the person who called in a document that's called Aging with Dignity Five Wishes. And it's, I think, a very concise, very penetrating, very insightful document.

And it says, my wish for, one, the person I want to make care decisions for me when I can't, two, the kind of medical treatment I want or don't want. Three, how comfortable I want to be. Four, how I want people to treat me. Five, what I want my loved ones to know. And this document can be secured in-- please, if you're listening now in driving, don't write this down.

RACHEL REABE: Brent, keep your hands on the wheel. We will transfer this information to our listener services. So after you give it to us, Dr. Jensen, over the ear, this information will be available by calling Minnesota Public Radio after the program.

CLAYTON JENSEN: Again, it's Aging with Dignity. Headquarters, post office box 1661, Tallahassee, Florida, 32302-1661. And again, the document can be secured from the Aging with Dignity firm-- or organization, I should say. So I would advise the person who called in to get that document. That will be a basic framework, I think, for some of the questions that he has.

RACHEL REABE: Good place to start. Again, it's called aging with dignity. Post office box 1661 in Tallahassee, Florida. The zip code, the short version is 32302. John Boulger, what would you have to add to this conversation. I was flabbergasted when you sent me these options of advanced directives. I could not believe how specific they were, unbelievably specific.

JOHN BOULGER: I sent those to you as an example of how difficult it is for people to be able to make decisions.

RACHEL REABE: You convinced me.

JOHN BOULGER: Yes. Dr. Jensen and I were talking before we started. And I heard him mention at the introduction of this hour of the show about the goal of making it more understandable and easier. When I ask people to read these over, sometimes it's like I'm asking them to read a foreign language.

When we start talking about what it is they want using simpler terminology, then it's, yes, this is what I'd like. I want hydration. I want to have liquids. But it's difficult in the way it's worded. Part of it is just how complex our legal system has become. And the other is that sometimes I wonder if the people that are drafting it have an idea of what it's like dealing with the issue if you've never addressed it previously.

RACHEL REABE: And so do you feel-- or when you have clients in your office, instead of just saying, don't prolong my life if it's not the quality of life that I'd be looking for, do you direct them to go beyond that and say, hydration, yes, I will take all these options. I do not wish to receive hydration. I wish to receive hydration, unless I cannot physically assimilate hydration, all these different options. Do you really feel it's important that we go through and talk in that much specifics about these issues?

JOHN BOULGER: We keep having generations of these documents come out. I see that Dr. Jensen has with him a new edition of the Five Wishes that he referred to. I think that each generation is getting better than it was before. But I still think that we're short of a goal of making it easily understandable.

RACHEL REABE: And even though your study now has received a half a million dollars for Matters of Life and Death to go out and educate the public, educate the professionals, really turn the spotlight on this whole issue, other efforts have not been all that successful.

We talk about the support study, $28 million, six years involving 9,000 patients. And after all the work and all the money, they came up with basically where they started, which is people continue to die in intensive care units. They're dying alone. They're dying in pain after weeks of futile treatment, even when they have living wills. Does this discourage you terribly in your worth, Dr. Jensen? Or do you think we will still keep trying?

CLAYTON JENSEN: We're going to keep trying. And item number one that I want the listeners to be aware of, there is something now called EPEC, E-P-E-C, Educating Physicians for End-of-Life Care.

And they currently now are on the internet. Plus, the American Medical Association has been so concerned about this issue that they are making an all-out effort to educate physicians about end-of-life care.

Secondly, we have on our steering committee, the executive director of the North Dakota Bar Association. We also have as one of our focus groups, a number of attorneys, the executive director of the North Dakota Medical Association, and legislators.

And the interim committee of the legislature has deferred any sort of action on either the living will or durable power of attorney, a combined document, until after we have had the opportunity to thoroughly study this issue. And then we will be making recommendations to the North Dakota legislature, recommendations that we hope might help resolve some of these problems.

RACHEL REABE: And maybe the culture is changing slightly. Maybe the fact that the book Tuesdays with Morrie was on the bestseller list today, now 123 weeks, some people are hearing, some people are interested, some people are willing to talk about it.

CLAYTON JENSEN: I think this is maybe going to be one of the major movements that will occur in the health care and the legal field in this next 10, 15 years.

RACHEL REABE: And, of course, Congress has gotten involved. And state legislatures are getting involved. 1991, Congress passed a law requiring health care providers to provide information about advanced directives. And yet the numbers remain small. So, Dr. Rice, you're doing the work that you've been required to by Congress, and yet you can't force them to sign it. You can't force families to talk about it.

JOHN RICE: Yes, I think hospitals and providers are doing a very good job informing people, asking if they do have durable powers of attorney, and asking if they do have living wills. But they can't, like you say, make them sign them and make them develop them. They can make them aware that they should have and that they do have benefits.

But one of the things that we've noticed as we've looked at hospice and looked at Medicare hospice usage is perhaps some of the professional unawareness because patients are not referred on an early basis to hospice.

We see actually declining lengths of stay. Hospice is about 180-day benefit. And we see that the average patients used to be in hospice for about 60 days. That's dropped over the last three years to now where it's about 37 days. So even though we are getting more education, there seems to not be the referrals and the usage that we think really needs to occur with this type of benefit and with these types of activities.

RACHEL REABE: And North Dakota and Minnesota are largely rural states. And I that's one of the challenges that you have in your project, Dr. Jensen, is not everybody is living in a community which is covered by hospice. Who stands in the gap if there is not a hospice there?

CLAYTON JENSEN: Well, that's one of the issues that we'll be addressing, which will be access. We're looking at what we call a continuum of care, what is absolutely required for the dying person, what might be things that we would like to have available to the dying person.

You have to realize that in the state of North Dakota, as large as it is, we really only have 14 hospices, one free standing here, Hospice of the Red River valley, which is far and away, takes care of most of the patients on the hospice rolls statewide.

And the other hospices are those that are involved with acute care hospitals in our communities across the state. But many communities just do not have access. And that's one of the issues that we hope to address.

RACHEL REABE: And 15% of the people in North Dakota die in a hospice setting. Nationwide, that number is 20%. So still there is much work to be done. But I want to ask you to clarify something for me.

I think when we hear the word hospice, we assume we have made the decision, hospice. We're going to have a death at home. Is that always the case? Can people say, we cannot do it at home, we are not capable of doing it home, we would like to have our loved one in the nursing home but still bring in the hospice aspect of things? Is that possible.

CLAYTON JENSEN: Very much so. As a matter of fact, hospice of the Red River Valley has contracts with virtually all the hospitals and long-term care facilities in this area, the area that they service. You have to remember that long-term care patients, the long-term care facility is their home. So that's essentially dying in a sense in their home also. So hospice, yes, hospice has the ability to work with acute care hospitals, long-term care facilities, as well as home health care.

RACHEL REABE: And would it be your desire that that 15% would be increased dramatically?

CLAYTON JENSEN: Yes. I'm not sure that I could give you a number. But I will say this, in response to the physician-assisted suicide law that takes place in Oregon now, they really have developed in everybody's opinion, one of the best programs for end-of-life care, compassionate, spiritual, physical, emotional support for patients in the course of dying.

There has to be something other than suicide. And this, to me, is terribly important. As Byock pointed out this morning, closure to a person's life, resolution of problems, issues that need to be addressed and can be a period wherein it is a growth essentially of that person and the family.

RACHEL REABE: One of the main concerns dying people have is about pain. I don't want to be in pain. And then certainly, that in many times is the motivation to lead people to start talking about suicide. I don't want to have to go through that pain.

Do we need to do a better job of pain management? I know national studies have come out even in the last couple of weeks saying, we really do not do a good job of pain management? We could do so much better.

CLAYTON JENSEN: You're absolutely correct. We probably don't do as good a job of pain management as we should. In today's society, with the medications that we have, the routes of administration, everything from drips to patches to oral, whatever the case might be, it really is unconscionable for anybody to have to die in pain, period.

Part of that's professional education, nursing education, physician education, evaluation of pain in long-term care settings to make sure that patients get the medication that they require. Not so much an issue in acute hospitals, who are maybe more versed in acute pain because of the acute care situations. But it's something, yes, that we have to address. And it was high on everybody's list as far as the issues they want resolved as death approaches.

RACHEL REABE: And I know in Byock's book, he frequently will tell the patient, you will not be in pain. I guarantee you we will do everything in our power to manage your pain. So you will not experience a painful death.

And in my mind that would relieve the anxiety level of the person dying and the family going through it, that if they really believe that the pain issue is going to be handled, now we can concentrate on making these last weeks or months a meaningful time.

CLAYTON JENSEN: Absolutely. The anxiety component compounds the pain component. And if you can get rid of the anxiety just by reassurance alone and couple that with good pain management, yes, you've got the problem solved.

RACHEL REABE: And if you have a doctor who really doesn't subscribe to this, find another doctor?

CLAYTON JENSEN: Absolutely. I wouldn't want any patient or loved one of mine dying in pain, no question about it.

RACHEL REABE: We go back to our phones. Didi is calling from Embarrass. Good afternoon, Didi. Welcome to Mainstreet.

DIDI: Thank you for taking my call. I had a comment for the mother whose father is dying. And she wanted to know how to deal with her four-year-old. 12 years ago, our son died when my daughter was four years old.

And I was given a book called Lifetimes by Bryan Mellonie and Robert Ingpen. And I think it's an age-appropriate book. And it just explains about all lifetimes. And I found that very helpful with my daughter and a couple of other things that I thought about while I was waiting.

I found that as she matured, I had to revisit her brother's death over and over and over again as she became more aware of exactly what death encompassed and the finality of it. And also I had to remind her that she was healthy and that if she got a cold or something like that, she was not going to die.

And I also had another comment, if I might, about access. Up here on the Iron Range, we do have a problem with access to hospice. And just recently, as a community, we got together and have decided that we would approach the hospice in Duluth and see if we could become a branch of that hospice at Saint Mary's. And that is becoming a reality. So we are solving our access problems as a community for our rural area. And thank you very much.

RACHEL REABE: Thank you, Didi. So that's something that communities, they don't have to just bemoan the lack of services and we don't have any of that available, so I guess we can't do it. They can go after it as well.

CLAYTON JENSEN: Oh, by all means. Hospice of the Red River Valley, for instance, provides outreach to Lisbon, to Valley City, to Mayville, to Detroit Lakes, Minnesota. And if there's someone here from a hospice in the audience-- and I'm sure there is-- there's at least one more that I should be aware of.

RACHEL REABE: John Boulger, we've got to talk about some of the terms that have been mentioned, because I can just hear people thinking, I did a living will. But what's a durable power of attorney? What's an advance directive? Give me the simplest explanation you can of all these things and how they fit together.

JOHN BOULGER: Living well is exclusively for the situation where someone has been diagnosed as having a terminal condition from which death is imminent. They've been given less than six months to live by a physician. It accomplishes whether you want to have artificial life-prolonging measures taken to assist you what your attitude is towards nutrition, food, and hydration or something to drink or liquids.

It is not as broad a scope as a durable power of attorney for health care. That's North Dakota's term for it. Minnesota's term is a health care directive. In fact, Minnesota only has one document called a health care directive. And in those documents, you can set forth your desires for what type of health care you want. And you can also say, if I'm not in a position to make health care decisions for myself, then here is the agent I'm naming to make those health care decisions for me.

As long as you're capable, competent to make health care decisions for yourself, your own wishes as you relate them to your health care providers and your family will take precedence and have priority over the durable power of attorney for health care or the health care directive. But when you can no longer make those decisions for yourself, they have the wishes and directives you have put down to go by. And they also have an agent that you've named who can do that.

RACHEL REABE: You do not have to wait to do that until you've been given a terminal?

JOHN BOULGER: No, absolutely not. You can sign these documents whenever you please. Each state has a procedure or a format they want you to go through in signing them. They may limit who can be witnesses because they don't want somebody, as an example, who would be inheriting earlier if you lived not as long being a witness. So generally, it's a nonfamily, nonhealthcare provider witness that you need. Some states also have notary public requirements or the alternative of either two witnesses or a notary public.

RACHEL REABE: How long do they last?

JOHN BOULGER: Well, they last until you revoke them or terminate them.

RACHEL REABE: If you move to another state, do they move with you?

JOHN BOULGER: Generally, yes. Most states or the more common practice among states is that they will recognize that type of document executed in a state that provided for the document, even though it's not the format of the new state. But that's not universally true. So you would need to check.

RACHEL REABE: And all of these questions should be addressed with one's own legal representative or with one's own health care provider?

JOHN BOULGER: That's correct. Health care providers are getting very good about bringing that up and I think the legal community is also.

RACHEL REABE: Clayton Jensen, John Boulger, John Rice, thank you for being with us today. This special Mainstreet broadcast is a production of Minnesota Public Radio. Our engineers are Cliff Bentley in Fargo, Randy Johnson in Saint Paul. Our producer is Sarah Meyer, site producer Bob Reha, executive producer, Mel Sommer.

We'd like to thank Deb Magnuson and the staff at the Waterford for making this broadcast possible. Minnesota Public Radio's Mainstreet team consists of 12 reporters at MPR bureaus across Minnesota. You can hear this broadcast at on our website and click on Mainstreet. I'm Rachel Reabe.

SPEAKER 3: Coverage of rural issues is supported by the Blandin Foundation, committed to strengthening communities through grantmaking, leadership training, and convening.

RACHEL REABE: On the next All Things Considered, the state revenue forecast gives lawmakers an idea of how much money they have to spend this session. That story on the next All Things Considered weekdays at 3 on Minnesota Public Radio.

You're listening to Minnesota Public Radio. It's 57 degrees at KNOW FM 91.1, Minneapolis-Saint Paul. Today's Twin Cities' weather calls for mostly cloudy skies and mild conditions. Near record high temperature is expected in the mid 50s. Tonight, mostly cloudy, low of 30, high of 42 tomorrow. The time, 1 o'clock.

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