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(Announcer)
Major funding for Second Opinion is provided by the Blue Cross and Blue Shield Association, an association of independent blue plans, committed to better knowledge leading to better, more affordable healthcare for consumers.
(music)
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(Dr. Peter Salgo)
Welcome to "Second Opinion" where each week our health care team solves a real medical mystery. When we close this file in a half an hour from now you'll not only know the outcome of this week's case, you'll be better able to take charge of your own health care. I'm your host, Dr. Peter Salgo, and our story today concerns Jill. Now you've already met our special guests who are joining Primary Care Physician Lou Papa and Health Reporter Kat Carney. No one on this team knows the case except me because I have got it right here. So let's get right to work, shall we?
Our story today does concern Jill. She is 52 years old, she is not married, she has two daughters who moved out of state several years ago and whom she does not see often because they are busy with their families. Her friend, Jill's friend, calls 9-1-1 when he finds her sick in her apartment and she is taken directly to the emergency room. And Lou, I'll just telescope some of this because it's a pretty scary scene. In the emergency room her blood pressure is 80 tops. They can't even tell what her diastolic, her bottom number is; it's just palpated with her fingers. Her heart rate is about 130. Her oxygen saturation is 80 and she is getting 100 percent oxygen by mask. An IV was started in the ambulance and it's running wide open. You're in the emergency room. What are you thinking and what do you do?
(Dr. Lou Papa)
Well, it's a very serious situation. This is somebody who is in extremis, as we say. She has low blood pressure; her heart rate is speeding up to try to keep up with it. She's not oxygenating well. It's a serious situation.
(Peter)
Could she die?
(Lou)
Sure. I mean she's in a situation where at first blush it looks like she's not profusing adequately and that includes her brain, her heart, her vital organs.
(Peter)
Profusing means what?
(Lou)
Blood supply reaching the vital organs so the oxygen nutrients can get there and the toxins can be taken away.
(Peter)
Okay, so she's clearly very, very sick. They decide in the emergency room that she's going into respiratory failure. She's put on a ventilator and she's put on antibiotics. A second IV is started in the emergency room and they whisk her up to the intensive care unit. So, we're talking about an ICU, an Intensive Care Unit. What's the goal of ICU? Do ICUs actually save lives?
(Lou)
Well, that's a good question. The goal is to save lives. Unfortunately they have the onus of being the place where the most people probably die as well.
(Kat Carney)
I'm kind of curious. By the time Jill has been moved to ICU she has been in the hospital for several hours, she's very ill. At what point is her family contacted?
(Peter)
I do have some notes about that in the chart. It takes three days for Jill's daughters to show up. After three weeks-now mind you, it's three weeks of intensive care in the ICU with her daughters there all the time. The doctors decide that she's getting to be a bit more stable. It's time to do a bit more of a work-up and see if they can find out what's going on. I'm just going to summarize the work-up for you because there's a battery of tests that they do in the ICU. She's anemic, she has both Hepatitis A and C and B virus tests positive. She has liver and kidney dysfunction. She has some atrophy of her brain. And, she has a pneumonia by chest CT in a large amount of a mass in the right mid-lung field and some big lymph nodes in her mediastinum. Now that's an awful lot of medical-ease, Lou. Boil it down.
(Lou)
The concerning thing is this mass that is sitting in the lungs with the lymph nodes what that could be due to. But a lot of the other stuff, the fatty infiltration of the liver and her anemia and the atrophy of her brain. She's been in the ICU for three weeks.
(Dr. Timothy Quill)
This is a situation where there is a good chance she may not survive and we need to start to think about that.
(Peter)
Clare, you've been there. Is it appropriate to start talking to somebody about dying before you know what's wrong absolutely?
(Clare Regan)
I think so. I think people have to make their own choices and if she's unconscious maybe she can't make that, but her daughters should make it for her.
(Dr. Peter Salgo)
Well let me tell you a little bit more about what's going on in the hospital because the doctors don't have the absolute diagnosis and they asked to do bronchoscopy, which is to put a tube into her lungs and actually get a piece of tissue, and they want to do a bone marrow biopsy. Can the daughters legally give consent to have this done on their mother?
(Timothy)
When a person can't consent for themselves, somebody has to consent on their behalf.
(Peter)
Legally though, are these family members legally, technically empowered to give consent to do these invasive and potentially dangerous tests?
(Timothy)
The answer to that is yes.
(Peter)
They are? All right, well that's what they asked the daughters to do and the daughters, it turns out, had a conversation among themselves about this and they asked, "Has mom ever talked to us about doing this?" And you're smiling already, why?
(Kathie Quinlan)
It's the perennial question.
(Peter)
Why is it the perennial question?
(Kathie)
We often hear, oh, well last summer at the family picnic mom said she never wanted to be on a ventilator, she never wanted to be living as a vegetable, but she never wrote it down.
(Peter)
Do you have to write it down?
(Kathie)
You have to write it down.
(Kat)
What happens in this case, you've got two daughters there, what if one daughter feels one way and the other daughter feels the other way?
(Lou)
Problem.
(Peter)
Why is that a problem?
(Dr. Lou Papa)
Well, it's nice to have consensus. It's always nice to have a consensus from the family so you can move forward because once you have that, despite what the legalities of it makes it a very contentious way to care for the patient if you have family members that are not agreeing on the treatment plan.
(Timothy)
In fact, if there's not agreement, what happens is the most aggressive path is followed.
(Dr. Peter Salgo)
Why would you push so hard if you don't know what she would want?
(Timothy)
Well, I think our ethos, our basic ethos, is to try to help people get better; to try to find things that we can fix and cure them. So our default sense is to move in that direction. We believe that most people want that so unless we have evidence that someone doesn't want that, I think we generally push in that direction until we start to get into these zones where the level of suffering is very high and our answers are not looking very promising.
(Peter)
Let me tell you what Jill actually had because her daughters go ahead-they argued as you did by the way. They said in this document entered in the chart, we think we should push forward until we really know where we are. Since that time it's been about four weeks now since she's been in the hospital. She's gotten a little bit better to the point where she's off the ventilator, the breathing machine, so she can talk. So they've done all of the tests. Now the doctor comes into the room. There's Jill. Her daughters are there as they have been every day for four weeks now, they're four weeks into the hospital course, and the doctor says, "Jill, you've got lung cancer and its spread to your bones." The daughters are sitting there. Jill is sitting there. What does this diagnosis mean?
(Lou)
This is not good news obviously. Metastatic lung cancer is-
(Peter)
"Metastatic" meaning spread.
(Lou)
Meaning spread; is not a curable condition.
(Peter)
Now Clare you were given that kind of diagnosis.
(Clare)
I was just told it was cancer; they would operate.
(Peter) Okay
(Clare)
And once they cut me open if they found it had spread they wouldn't do anything about it except sew me back up.
(Peter)
Now were you alone at the time when they told you?
(Clare)
Yes.
(Peter)
There was no one with you.
(Clare)
No.
(Dr. Peter Salgo)
So there you are, all alone.
(Clare)
Yes.
(Peter)
Receiving this kind of news. How good are we as a profession-doctors, nurses, health care providers, social workers, all of us-in communicating this kind of a diagnosis to people. Are we any good at all?
(Lou)
We're okay. You hate doing it. I mean obviously it's not something you look forward to, but there is just as much angst for the doctor as there is for the patient, especially if it's someone you've known for a long time and have grown close to. Now you're going to have to deliver this bad news and let them know how bad it is and what the future may hold. I think we do okay but I think a lot of it is we're just as afraid of death as the patient is.
(Peter)
Well I'll tell you what happens here. Jill and her daughters say please get a cancer specialist in here and talk to us. So an oncologist is called in to a family meeting and Jill asks some reasonable questions here. She wants to know some numbers. She wants to know the odds. Is it a reasonable question for her to ask do you think, "What are the odds that I'm going to survive? What are the odds that I'm going to be in great pain? What are the odds that this is going to be a long and arduous course?" Are these reasonable questions?
(Kathie)
Goodness yes. It's her right, her right. It's not a privilege; it's her right to know the answers to those questions.
(Peter)
Is it fair to say that at this point Jill is considering her own mortality and her potential death?
(Dr. Timothy Quill)
I think that this discussion we're having actually illustrates the real challenge of bad news because one person is going to be going directly to death, the next person is going to be asking hard questions about data and wanting to know what's going to be happening, and the other patient, the next person, is going to be not hearing anything.
(Peter)
Well, I'll tell you what they told Jill; that her treatment, if she elected to have treatment, will change her expectation, her life expectation, from a six-week duration to six months at best and that the chemo, which they were recommending chemotherapy, powerful anticancer drugs, might in fact kill her. These are important facts for her to know. Is it reasonable for her to debate not having therapy at this time?
(Marilyn Webb)
I think it also depends at this point on what's happening in her life. This is more of a life question than a death question.
(Peter)
How do you mean that?
(Marilyn)
How do I mean that? Say her daughter is pregnant and her daughter is due in six months and she wants to see her first grandchild. She might opt to have treatment even though it may be more difficult with the treatment than it might be without the treatment because she wants to be there for that first grandchild.
(Lou)
And your response may be, hey, six months from now I'll be leaning over the bassinette kissing my grandchild, where in reality you may be completely incoherent, lying in bed in your own stool. I mean that's the reality.
(Marilyn)
And you may not know until you get there whether you want to wear those Depends or not and whether it's important to you to see that grandchild
(Lou)
Right
(Marilyn)
and keep the Depends on whereas before you might say, if I'm incontinent, that's it.
(Lou)
Right
(Kat Carney)
I would think a lot of the patient's decision would have to do with how the information is presented by the physician. Some patients aren't going to be that proactive with asking. Well, 20 percent of what-they're not going to be that proactive. Or they might get a doctor like Clare's doctor where they say, its cancer; good luck. Is that basically the way-? So a lot of it I would think would have to depend on how the information is presented to the patient.
(Timothy)
We better do a lot better job though than we do because people are so surprised when it doesn't go well or when the travel is much, much harder than they expect. And we all want to be hopeful. I want to be hopeful. And I will support and talk about the hopeful side but that other side that's so hard to talk about needs to occur at the same time, and that's the harder part and that the people don't want to ask about, by and large.
(Dr. Peter Salgo)
Clare, was that the kind of debate that you were having with yourself when they gave you the diagnosis?
(Clare)
No
(Peter)
You sound like you're atypical.
(Clare Regan)
My sister who is three years older had just been diagnosed with colon cancer and both of us were extremely healthy people beforehand. And we had talked about it and we both said no chemo, none of this. Our quality of life is more important than quantity. I was 76, she was 79.
(Peter)
Well, you know, this is an opportunity. Sort of change gears just a little bit and pull back from Jill's case because I want to, if you'll allow me, to take a more global view of the American view of death. If you go back just a century ago, the clinical perspective was entirely different. The average age of death was in the mid-40s, 45, 46. The most common cause of death in the late 19th or early 20th Century, infection, accidents. The majority of people in this country died at home. How is the nature of dying globally changed?
(Marilyn Webb)
It's utterly changed.
(Peter)
How so?
(Marilyn)
For one thing, we have 26 or 27 years extra of life because we don't statistically die until 77.
(Timothy)
We're living healthy a little bit longer. Living sick a lot longer. And at the end of sick we have all these choices to make.
(Peter)
Kathie, are Americans still dying at home?
(Kathie Quinlan)
Oh I wish they could be. I wish they could be.
(Peter)
I gather from this the answer is no?
(Kathie)
They are not. They are not, very few are at home now.
(Peter)
Twenty percent of Americans seem to find their way to death in the intensive care unit hooked up to devices. Is this a good thing?
(Kathie)
No. I feel that their death is often being desecrated.
(Dr. Peter Salgo)
How so?
(Kathie)
It's a sacred process and it's being desecrated in an intensive care when it is prolonged to futile end.
(Timothy)
We shouldn't generalize that all deaths in the ICU are horrible deaths. I've attended very beautiful deaths in the ICU. ICUs in the right circumstance are wonderful things. It's when they are misused and also patients really are-and our culture is a part of this-people really do want every drop of technology that is offered to them and there are so many new options for virtually every disease on the horizon that these choices are just so weighty and difficult.
(Peter)
Let's pause here for just a minute and sum up where we've come. We've come a long way. Before we go any further I think it's time to just sort of take stock. Advances in medical technology have changed the way we live and they have changed the way we die. Now as we approach the end of our lives many of us will need to make some choices. Some are simple, some of them are going to be complicated. Knowing and understanding the options available can help make the decisions that are right for each of us and I think it's also important to understand that the choices are there; that it's not a straightforward path and that it's dictated by the ICU or by the doctors. Let me tell you a little bit more about Jill. One of Jill's daughters contacts her doctor and tells him that she, the daughter, is extremely upset with the way in which her mother's diagnosis was communicated. I'm reading here in the chart she thinks her mother will give up now that she's heard this diagnosis. She tells the doctor that he, the doctor, should not have given the diagnosis to her mother while her mother was still so sick. Does she have a point?
(Timothy)
She has a point, but not talking about these things is worse than talking about them and I think the pain and difficulty of knowing what's going on I think is generally, not always but generally, something we have to work through with patients and their families.
(Peter)
Clare, eventually you came to the conclusion, after your surgery, after what they found, after they spoke to you, that you were dying.
(Clare)
Yes. My kids knew what I wanted from day one and I was very open about it. I mean I don't mind dying but I'm not terribly into pain.
(laughter)
(Peter)
You've made your wishes abundantly clear.
(Clare)
We have a "Do not Resuscitate" on the refrigerator.
(Peter)
On the refrigerator.
(Lou)
Very atypical.
(Peter)
Do people understand the process of dying?
(Kathie Quinlan)
They do not understand the process. As they often say, well I've never died before. Am I dying today?
(Kat)
It sounds like this daughter didn't have a conversation with the mother and says my mother has given up. She just on her own said I think she might give up. So it sounds like there's a lot going on with her.
(Dr. Lou Papa)
Well I think we expect too much a lot at a time like that. You give them the, oh, this is what's going on, these are your options, what's your decision. I mean you have to have some time to process that.
(Dr. Peter Salgo)
As you suggest actually, a certain amount of processing time goes by and Jill and her daughters do have the kind of conversation about going forward, what the future holds for them. And as difficult as that conversation is, they sit down and they have it. Jill is firm. She doesn't want to spend her last days in a hospital. She does not want to receive aggressive hospital care and she and her daughters opt for comfort care and Jill says that she understands that she is not going to recover. So what is comfort care?
(Timothy)
Comfort care is generally offered under hospice programs but also you can use some of those same things without being on a hospice program, but it's basically where you provide aggressive diagnosis and treatment of symptoms. You take pain and shortness of breath and nausea and tiredness and you try to address those and make them as good as you can make it.
(Peter)
When does palliative care begin?
(Dr. Timothy Quill)
It begins basically when you get a very serious illness. Palliative care is a specialty within medicine that is really trying to treat pain and symptoms; make somebody as comfortable as possible, to enhance their quality of life as much as possible, and to help them work through these tough medical decisions.
(Peter)
When does hospice care kick in?
(Kathie)
The guidelines of Medicare are six months or less.
(Peter)
A diagnosis which would mean that it is likely within six months.
(Kathie)
A likelihood to die within six months, and that's why it would be so wonderful if people would accept this resource at home if possible. And it's such a gentle, beautiful kind of caring and it is a very natural kind of caring. Someone has called it low tech-high touch. But we are often very cognizant of the fact that the patient isn't always the patient. The patient isn't always the one suffering more grievously and very often there are various members of the family, so we are constantly shifting gears and following queues; giving little nudges to the family just so we can help minimize the regrets they have later.
(Peter)
Jill actually uses a phrase you'll recognize. She tells her family, and I'm going to read it here, "I want a good death." Is there such a thing? What on earth does that mean?
(Kathie)
She needs to define her own death.
(Marilyn)
I agree. She needs to figure out what she means by a "good death" and generally in the people that I've been with, it means having your symptoms well managed. It means having your family come together. It means learning to say I love you and thank you and goodbye to the people that you love.
(Peter)
Is a home death the right death for everyone?
(Lou)
It may not be. I mean there are patients where it's too much for the patient, too much for the family for them to be at home. I think for most people it probably is, but there is a proportion of people that it's not the best setting for them. Everybody would love to die in their sleep at home, right? That's what everybody talks about.
(Kathie Quinlan)
No, not necessarily.
(Clare)
Nope
(Peter)
I knew you would be the contrairian here. What do you mean no?
(Lou)
We have a very unique panel here. We have a lot of people with insight and understanding of that, but the majority of people don't really-
(Clare)
I would like to be pain free. I don't want to be in agonizing pain but I'd like to be as alert as possible. You only get to die once in a lifetime and I would like to experience it.
(Dr. Peter Salgo)
What's the role of the primary care physician here? We talked about the family. We talked about the ICU. But you're the one who's been the primary care physician. You know the person the best.
(Lou)
Absolutely, and I think this is what makes you or breaks you. For me caring for the dying is some of the best chances I get to display my ability to be a doctor because you have technology that's available to you, but it really boils down to your relationship with the patient and your ability to provide healing, whatever that may be. It's very rewarding work. It's some of the most rewarding stuff I do.
(Peter)
I do want to pause for just a moment and sort of sum up where we've been. I think it's fair to say based on what we've heard here that a good death is possible and it doesn't really matter if you choose aggressive treatment or comfort care. It's your decision. It is a team effort. It depends on you, the patient, the family, your health care professionals, and it requires careful, open communication. Talking it out. Understanding what you want. Is that fair, Lou?
(Lou)
Absolutely.
(Peter)
Well let me tell you a little bit about what Jill says. Jill does leave the hospital and she goes home. She's told her daughters, and here's a quote: "I want to die at home not at the hospital." And she does not want to be kept (quote) "alive on a ventilator." She's been very clear with her daughters about her wishes. So that's it. That's all she does. She tells her daughters what she wants. Is that enough?
(Timothy)
It's probably not enough, no. She should fill out a formal Health Care Proxy document. However, if she hasn't done that and she has really had this conversation, generally decisions can still be made. She should fill out though such a document.
(Lou)
It's nice to have that piece of paper.
(Peter)
That's an advance directive.
(Dr. Lou Papa)
What it basically is, is you're naming somebody, one of the daughters, another one is an alternate if need be, to relay what your wishes are.
(Peter)
How many people have these advance-yes, we're not going to take a vote
(laughter)
(Peter)
Across America, this enlightened panel not withstanding-
(Marilyn)
About 25 percent.
(Peter)
Twenty five percent.
(Timothy)
Despite Terry Shaivo and all the public discussion, it jumped up to 25 percent.
(Clare)
I insisted that my kids sign one of these things that they wanted so it would be in writing, the ones that weren't married, because I figured it was going to be my decision. As long as it's going to fall on me, I want it in writing.
(Marilyn Webb)
Clare, that is really amazing that you did that because supposedly you're the one who's dying.
(Clare Regan)
Well I did that before.
(Marilyn)
That's great.
(Lou)
I think most people don't have that ability to-I mean I think we're afraid of facing immortality. It's not so much the piece of paper. The piece of paper is a great thing to have, but there has to be a serious discussion about what type of death do you want. That's the main issue.
(Dr. Peter Salgo)
Jill and her family have been working together at home with home hospice to manage Jill's health care. She's able to manage her pain. Her daughter's report that they have had conversations about her illness and it's actually brought them closer together. What do we have to learn from the process; I guess is what I'm looking at, that Jill has gone through?
(Lou)
Communication. The whole part of it, a big part of it, is being able to communicate the information so you can make the right decisions whether it's the doctor to the patient, the patient to the doctor, to the family. I mean if you look at it, things always became clear after there was a sobering, serious, real life discussion with the patient and the family.
(Peter)
Well let me sum up a few last little things here. End of life care presents challenges on every level; individually, culturally. There are steps that we can take as individuals and as a society to assist in planning and managing our own definitions of a good death and most importantly I think, if we've learned anything from this discussion, is that it's time to start talking to your family and talking to your doctor early, before you get sick, to make informed decisions about what's right for you. Now Clare , I can't let this broadcast end without first of all admiring your courage in coming on and sharing all of this with us. Thank you. How do you feel, by the way?
(Clare)
I feel fine.
(Peter)
How did I know she was going to say that?
(Clare)
In fact, one of my daughters said, "Well, what if I make the wrong decision?" And I laughed and said "We'll never know will we?"
(Peter)
And with that, let me sum up where we've been. You are absolutely remarkable. Anything else on your refrigerator I need to know about? Thank you so much for being here. Thank you all by the way. Well, we've certainly covered a lot today. Let's see if we can sum a few things up. Advances in medical technology have changed the way we live and the way we die. As we approach the end of our lives many of us will need to make choices. Some of them will be simple, some of them will not. They will be complicated. Knowing and understanding the options available can help us make decisions that are right for us. A good death is possible, whether we choose aggressive treatment or comfort care. It is a team effort of the patient, the family, and the health care professionals, and it requires careful, open communication. End of life care presents challenges on every level, individually and culturally. There are steps that we can take as individuals and as a society to assist in planning for and managing our own definitions of a good death. Most importantly, start talking with your family and your physician early, before you get sick, to make informed decisions about what is right for you. And our final message perhaps more poignantly today that usual is this: Taking charge of your health means being informed and having quality communication with your doctor. I'm Doctor Peter Salgo. I'll see you next time for another "Second Opinion."
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Search for health information and learn more about doctor/patient communication on the "Second Opinion" Website. The address is pbs.org.
(Announcer)
Major funding for Second Opinion is provided by the Blue Cross and Blue Shield Association, an association of independent blue plans, committed to better knowledge leading to better, more affordable healthcare for consumers.
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