A Better Way of Dying
Wednesday, February 10, 2010
"A Better Way Of Dying" looks at legal and medical issues surrounding end-of-life care, The authors discuss a patient's right to die, a "compassion protocol" for dealing with terminal illness and how to achieve "comfort care" only instead of treatment for every reversible condition.
MAUREEN CAVANAUGH (Host): It seems as if we all should have learned more from the national nightmare that was the Terry Schiavo case. Back in 2005, everyone from family members to the President of the United States got involved in whether a woman with irreversible brain damage should be allowed to die. Because of that tragic story, many people went out and got advance directives or living wills to let their families and doctors know their wishes about end of life care. But, it seems even that is not enough. The aim of most medicine is to keep people alive at all costs, and often the directives are disregarded. A new book offers what it calls an effective framework for setting down clear, legally-binding instructions for end of life care. I’d like to welcome my guests. Dr. Jeanne Fitzpatrick, and good morning, Dr. Fitzpatrick.
DR. JEANNE FITZPATRICK (Physician): Good morning, Maureen.
CAVANAUGH: I’m going to call you Jeanne because I also have your sister on the line, if I may, your co-author, attorney Eileen Fitzpatrick. Eileen, welcome to These Days.
EILEEN FITZPATRICK (Attorney): Thank you.
CAVANAUGH: And they are both co-authors of “A Better Way of Dying: How to Make the Best Choices at the End of Life.” I’d like to invite our listeners to join the conversation. If you have an advance directive for end of life care, tell us why you made that decision. Our number is 1-888-895-5727. Call us with your questions and your comments, 1-888-895-KPBS. Jeanne, tell us a little bit about your background. You’re a medical doctor. How long have you been practicing medicine and where is it that you practice?
DR. JEANNE FITZPATRICK: I’m currently practicing outside of Salem, Oregon. I’m an emergency room physician and I’ve worked in small emergency rooms all over the country for about 25 years.
CAVANAUGH: And Eileen, what about you? How long have you been practicing law and where?
EILEEN FITZPATRICK: Since 1986. I practiced in Boston initially and then in Berlin, New Hampshire, and right now I’m in California. I have a small practice and I also write. This is the first book of mine that’s been published.
CAVANAUGH: And why did you write “A Better Way of Dying”? Let me start with you, Eileen. Why do we need this book?
EILEEN FITZPATRICK: Well, Jeanne and I have worked on various projects together but the one that really coalesced for us had to do with these problems in end of life care. I’ve written advance directives for many of my clients and I can give you an example of the type of problems…
EILEEN FITZPATRICK: …that these clients run into. I got a call from Florida from a child of one of my clients, whom I had done his advance directives for him. And the whole family was on board with this. This client did not want to have heroic measures when he was at the end of life and, say, had a heart attack or a cardiac arrest. And despite these documents that clearly set forth his wishes, he was in a nursing home, he choked on his dinner, stopped breathing, the nursing home called the ambulance, the EMT guys came in, cleared his airway, intubated him, and put him on life support. He was transported to the ER and the hospital was not going to disconnect him from life support.
CAVANAUGH: Right, right.
EILEEN FITZPATRICK: These kinds of things happen all the time and Jeanne has many more stories of this kind from her practice in the ER. We compared notes over the years and felt that we should be able to do a better job than we’re doing.
CAVANAUGH: And, Jeanne, thank – you do have an awful lot of very moving stories in this book, and I – you begin the book with a story of Phyllis Shattuck (sp) and it really does take us right to the heart of people who really sort of need to have some – be able to give some sort of guidance to people of what they want at the end of their lives. She was a resident of Pennsylvania, she had end-stage lung cancer, and you say that she was ready to die. Could you tell us her story?
DR. JEANNE FITZPATRICK: Well, she came into the emergency room where I was working at about three o’clock in the morning and when I walked into the room it was – all I knew about her at that point was that she had end-stage lung cancer. And end stage means that we have done everything we think we can do for her, and basically sent her home to die. This is a story from my residency, which was a few years ago, and it pre-dated hospice. Nowadays, Phyllis would probably have the help of – hopefully, have the help of hospice and have a much better death. But she was sent home without even oxygen. And when I encountered her, she was barely conscious. She said to me, please, let me die, and then she slipped into a coma. And I was contemplating how to make her life more comfortable as she died probably within the next two hours when a team showed up that had been ordered by her attending who hadn’t seen her and ordered her put on a ventilator. And she was put on a ventilator, resuscitated and spent six weeks in the hospital on the ventilator before her kidneys finally failed and she died. And for those six weeks, each day she greeted me with a blackboard on which she’d written ‘please let me die.’ That was the only way she could communicate because she was on a ventilator for those whole six weeks. And I’d like to think that that kind of nightmare won’t happen in this day and age. But it certainly was pivotal in beginning my interest in end of life care and sort of sparked the interest for me that I’ve continued to have about the laws and how they’ve changed and how practices have changed. And we have come a long way but we have a long way to go.
CAVANAUGH: Jeanne, explain for us, if you would, the mindset of doctors then and apparently still some doctors now about doing the absolute most they can even when someone is in a state such as Phyllis Shattuck.
DR. JEANNE FITZPATRICK: Well, her doctor said to me, my patients don’t die. And I’ve heard other physicians say the same thing. I think it is less common nowadays. Physicians are getting some training during their residencies in end of life care, and there is a growing palliative care movement. There are even now residencies in palliative care. That’s only been the last few years. And we – First we conquered death, you know, the great American way, conquer Mother Nature, and we pushed back death as far as we could and even physicians now are starting to realize that quality of life also counts. And I think we are getting more training in helping people to talk about their dying and making their dying more the way they want it rather than the way physicians want it. But it still is a gut reaction and an impulse that physicians have to try very hard to fight, to do anything other than the most they can. You have this power to save a life and that is a reflex that physicians will do always unless they really stop and control themselves.
CAVANAUGH: I’m speaking with Dr. Jeanne Fitzpatrick and attorney Eileen Fitzpatrick. They are co-authors of “A Better Way of Dying: How to Make the Best Choices at the End of Life.” And we’re inviting our listeners to join the conversation. If you have a story you’d like to share, if you have an experience in trying to get a relative’s end of life wishes respected, you can give us a call at 1-888-895-5727, that’s 1-888-895-KPBS. I just want to ask you another question, Jeanne, if I may, and that is you say that now, nowadays, now Phyllis Shattuck probably would have been sent home or to a hospice, which – with much better concern about how to make her comfortable in her last days. Is that something that is across the board now? Is that widespread? Or are there still problems with that?
DR. JEANNE FITZPATRICK: Well, one of the differences is Phyllis had a terminal disease. She had lung cancer. And control at the end of life is much easier for people who are designated terminally ill but that designation is very hard to come by for a lot of people who are also at the end of life but don’t have cancer, people who are dying of heart disease or lung disease or just of extreme old age and debility. And I meet a lot of people in my practice who are leading a life that most of us would not choose to live. Someone who arrives in my emergency room and maybe hasn’t been out of bed for two years and hasn’t recognized their grandchildren for five years and hasn’t been able to live independently for ten years, and I stand by the side of their bed and hold their hand and try to see if anybody’s home in this body, and I always wish that I had been able to talk to them five years ago or ten years ago and ask them what they really wanted me to do on that day when they show up in my emergency room and they have a pneumonia or a urinary tract infection or dehydration, something that I can fix but would they really want me to? And most of the time I think the answer is no but they haven’t made those decisions ahead of time and empowered me to do nothing.
CAVANAUGH: Now, Eileen – I’m sorry. Eileen, you come at this from a legal perspective, being an attorney. And in the book, “A Better Way of Dying,” you note that the right to die was born with the case of Karen Ann Quinlan. I think that name is probably familiar to some but remind us of her story.
EILEEN FITZPATRICK: Karen was 21 years old when she stopped breathing at a birthday party and she was placed on a ventilator. This was in 1976 in New Jersey. And the father and the family asked that she be taken off the ventilator and be allowed to die. And this went up all the way to the New Jersey Supreme Court and the New Jersey Supreme Court held that Karen’s father was her legal guardian and his decisions about her care were legally binding and, therefore, his decision that she should come off the ventilator and be allowed to die was to be followed. This was a case that was followed by the whole country, on television and in the news media it made – And people had very strong opinions about it. Do we actually have a right to die that a guardian can enforce? Because it was in New Jersey, it only applied to people in New Jersey—that’s something that many people aren’t aware of—so that its effect was very limited. It was only when the U.S. Supreme Court took up the Nancy Cruzan case that we actually had a national right to die.
CAVANAUGH: And tell us about that case, if you would.
EILEEN FITZPATRICK: Well, that was – Nancy Cruzan was 25 years old. Her car spun out of control. She went into a ditch and stopped breathing. She was diagnosed being in a persistent vegetative state and she had a feeding tube and doctors said she could live another 30 years. And her parents, much like Karen Ann Quinlan, didn’t want her to live in that state and wanted her feeding tube removed. The family prevailed in the lower court and the Michigan (sic) Supreme Court reversed. It went to the U.S. Supreme Court and the court held – the court disagreed with the Missouri Supreme Court that a father could – that a legal guardian could make this decision. The U.S. Supreme Court—this is very significant—said only the person themselves can make this decision. No one else can make the decision for you. Your guardian cannot make that decision for you, only you yourself can make the decision regarding your care. And the family said that if friends and family can present evidence, clear and convincing evidence, of what you would have wanted, then you can follow that patient’s desires. So they sent it back to the lower court and Nancy Cruzan’s friends and family went on the stand and presented evidence that she had said during her life very clearly that if she was ever on a feeding tube or on a ventilator, she would want that disconnected, that she never wanted to live in a persistent vegetative state. And in the face of that evidence, the lower court ordered her feeding tube removed.
CAVANAUGH: We’re talking about the book “A Better Way of Dying.” My guests are Dr. Jeanne Fitzpatrick and her sister attorney Eileen Fitzpatrick. And we’re taking your phone calls at 1-888-895-5727. Let’s take a phone call now from Iris in San Diego. Good morning, Iris, and welcome to These Days.
IRIS (Caller, San Diego): Thank you very much. I’m delighted to hear that this book is out. I’ve had a personal experience fairly recently in San Diego. My husband and I were very clear about our wishes and had them written down, as I encourage most people to do with their families and to work with an attorney or write it out themselves, but in the care center or the continuing care center, which was adjacent to a nursing – a residential community, I saw several people who had also expressed their—through writing—their wishes and when an emergency occurred the emergency team would come in and simply override that and do the, you know, the ultimate in terms of trying to resuscitate and so forth as they whooshed away to the hospital. So I would encourage people to not only do what you probably have expressed in your book, and I’m anxious to read it, but also the San Diego Hospice, I got engaged in the care of my husband well before he probably needed it but they were wonderful in coming out to just simply be with him, to give a massage, to sing along. We sang together and rocked my husband back and forth. But when it came time to the period of actually leaving this world and dying, they were extraordinary. And one of the things that was a great, great comfort to me was that apparently if there is a situation that occurs, the nurses or aides will call hospice and they will prevent this kind of thing from happening where extraordinary measures are taken. It has to go through the hospice physician and, of course, that was – that worked beautifully. We simply – family gathered and so forth. They were there to help. So I encourage people not only to express their wishes to be an advocate if they can be or have someone be to clearly state the wishes over and over again at any meetings that you have at the nursing homes so that everybody is aware of the wishes, and also to incorporate, if they wish to, the hospice, which is absolutely wonderful. I can’t say enough about them.
CAVANAUGH: Iris, thank you so much. Thank you for telling us your story. And I’m wondering, Jeanne, if I could get a response from you from what Iris has said.
DR. JEANNE FITZPATRICK: Well, that is a wonderful story and that’s a story that I would categorize as a good death. It sounds like Iris did everything that she was able to do and with the help of the wonderful organization of hospice and provided her husband with a good death. The problem is that a lot of people don’t have access to hospice and have that problem of getting a diagnosis of terminal illness. And one of the main problems is with Alzheimer’s dementia or dementia from any cause and you will probably not get a diagnosis of terminal illness just because of Alzheimer’s. And there are many of us baby boomers, you know, we’ve impacted every stage of life as we’ve gone through it and as we’re facing our own end of life, we’re probably going to change how it’s done and many of us don’t want to live for 10 or 15 years in a care home with dementia, slowly sinking into that fog. And we want to take advantage of an opportunity for a natural death at an earlier stage in that slow decline. And that’s what our book talks about, is how to die a natural death at a point in your end of life when you decide that life is no longer worth living. And…
CAVANAUGH: We have to take a short break. Excuse me.
DR. JEANNE FITZPATRICK: Sure.
CAVANAUGH: We have to – just a short break and when we return, we’ll continue to talk about the book “A Better Way of Dying” and about the contract for compassionate care that’s included in the book. You’re listening to These Days on KPBS.
CAVANAUGH: I'm Maureen Cavanaugh. You're listening to These Days on KPBS. I’m speaking with co-authors Dr. Jeanne Fitzpatrick and attorney Eileen Fitzpatrick about their book “A Better Way of Dying: How to Make the Best Choices at the End of Life.” Let’s go to the phones. We’re taking your calls at 1-888-895-5727. And Heather is on the line and she’s calling us from I-5. Hi, Heather.
HEATHER (Caller, I-5, San Diego): Hi. I’m a hospice nurse and I’m calling because I’m surprised at how few people even know what an advance directive is. And recently – we have ongoing education, of course, in our office. And we were having a class and we asked how many of our own employees have advance directives. And it prompted us to start to plan an advance directive party in our office…
CAVANAUGH: Oh, my goodness.
HEATHER: …so we can sit and all get advance directives.
CAVANAUGH: Thank you for that. Thank you for that call. Well, that’s putting some life in it. Tell us, if you would, Eileen what is an advance directive and is it a good solution?
EILEEN FITZPATRICK: Well, the term advance directive is a catch-all term that refers to various documents. One of them is a ‘do not resuscitate’ order, DNR, and what that document says is that if you are basically dead, which is that would be like no brain activity, not breathing, heart stopped, you do not want heroic measures taken to resuscitate you, to get your heart started, to clear your airway and get you breathing again. So that’s the DNR order. There’s also the living will which says what you would like to have happen if you are on a ventilator, and there’s also the durable power of attorney for healthcare which chooses someone to make your healthcare decisions if you are unable to do so. That person will carry out your wishes at the end of life. The advance directives, as they stand, are extremely inadequate to actually have your wishes taken care of if you are no longer able to make your own decisions. And this is for two reasons. The first is that they all depend on having a terminal illness diagnosis and Jeanne has alluded to that…
EILEEN FITZPATRICK: …several times. The terminal illness diagnosis is difficult to get. It’s been – terminal illness has been defined by the court as six months or less to live and doctors are reluctant to give that diagnosis because giving it robs people of hope and somewhat hastens their death anyway, and they’re just reluctant to do that. And the other reason is that studies have shown that 80% of people who choose their healthcare decision maker never have a conversation with them about what their wishes actually are.
CAVANAUGH: I see.
EILEEN FITZPATRICK: In our society, we just don’t talk about death, and that has to change. In our book, our five-step compassion protocol is all about communication, to bring this subject out of the closet of unmentionables and get us talking so that we can have that communication and you can vastly increase the possibility that your wishes about what you want at the end of life will actually be carried out.
CAVANAUGH: Jeanne, in the book, it’s called the contract for compassionate care, and this is what you suggest in your book, “A Better Way of Dying,” that people should get involved in. Tell us about telling people. Who should you tell about your end of life wishes?
DR. JEANNE FITZPATRICK: Well, your most important conversation is with your healthcare decision maker. And everyone should have one of those. This is the person who is going to make your decisions when you can’t and almost all deaths nowadays involve a period of loss of control where the patient who’s dying is no longer able to make those decisions themselves and this is when that person will step in and decide whether to give you more IV fluids or whether to treat you with antibiotics again. So that’s the important – the first important one. And it’s also very important to talk with all of your immediate relatives, the people who are going to be around you at the end of your life, and make sure that they’re onboard and that they agree with your choices. And, of course, you have to talk with your physician. And those are the three most important communications.
CAVANAUGH: I’m interested, Jeanne, in your including Alzheimer’s in this idea of being able to develop a contract for compassionate care because this is not necessarily a terminal illness in the way that it’s legally defined. Do you find that you’re getting some, I don’t know, backlash from people who really don’t like this idea of just basically allowing people who have Alzheimer’s, at some stage of the disease, to be able to die and not be treated medically for acute illnesses that come up?
DR. JEANNE FITZPATRICK: I find very few of the boomer generation who disagree with that approach. Most of them fear Alzheimer’s more than anything else for the end of their life. And a lot of it is because they’re going through that kind of slow deterioration with their parents or they’ve been through it recently. Like Iris who called, almost everyone has a story of some kind of a prolonged and protracted suffering and a difficult death. And what our form does is let you choose some benchmarks in your decline through Alzheimer’s and when you get to those points, maybe when you haven’t recognized your loved ones for two years, at that point you can be allowed a natural death, not a suicide, not a physician aid in dying, but just not treating the next infection that would probably offer you an exit event. And that’s, I think, the most important new option and choice in our book, to give people control with Alzheimer’s at the end of life.
CAVANAUGH: And if you would, because I do want to take a couple more calls, what is an exit event because that phrase does feature in your book.
DR. JEANNE FITZPATRICK: That’s an acute illness that, if left untreated, will probably kill you. A simple illness that any emergency room physician can treat for cure or that they can leave untreated and treat only your comfort, keep you comfortable and let you die a natural death.
CAVANAUGH: We’re taking your calls at 1-888-895-5727, and your comments online at KPBS.org/thesedays. Let’s take a call from David in San Diego. Good morning, David. Welcome to These Days.
DAVID (Caller, San Diego): Good morning, ladies. Thanks for taking my call. I’m going to try to get through this with a straight – try not to be too emotional about it but I had a – My wife and I just went through a sad situation with her aunt and her uncle, who is still living. They were together for 60 years right here in San Diego. They came in through – from Germany to New York. But to make a long story short, just about 8 months ago, we get a call that her aunt’s in the hospital. She had had a mild heart attack. She’d already – had had asthma. She was at the young age of 79. Once they had her at the hospital and stuff, they found out that the husband was giving her too many sleeping pills so it caused her to have a mild heart attack. Finally, they got her back up to par and then she was able to go home and we were blessed for that. But then maybe two to three weeks later, she had gotten the flu or something else had happened and then she was, again, back at the hospital. She never made it out of there again. After several weeks of her being there and we kept visiting and visiting, then she ended up – we found out then she was moved to hospice. And so we go to hospice in San Diego and she was there for like 12 days. It was very sad just to see her hooked up to the ventilator and then, of course, they had her on probably morphine or whatever but they stopped feeding her and stuff and – but this was the request of her husband, and my wife and I didn’t feel that she should be there, that she should be spending her last days at home where she has been for 50 years of her life. And he felt that because it was such a nice environment that she should be there. And every time we’d visit, you know, the place was kind of closed up and there was no light coming through and…
CAVANAUGH: Well, David, let me get a response to this and thank you for sharing that story with us. I think that David’s whole story shows what a really emotionally wrenching time this is for an entire family and everybody can have a different opinion, Jeanne.
DR. JEANNE FITZPATRICK: That’s absolutely true and that’s, again, why the communication is such an important part of this. If the four of them had been able to sit down, they knew that she was ill already with the asthma and the heart disease and if they’d been able to sit down and talk about what her wishes were, then they all would’ve been more comfortable knowing that they were doing what she wanted and not what they wanted, and not being suspicious of the motives of some of the family members which can really taint a death. Death is never easy and it’s not going to be easy, no matter what we do. But the communication can really help those of us who are left behind at the end in knowing that we’ve done the best that we can for this person and really complied with our loved one’s wishes.
CAVANAUGH: Eileen, I wonder, if, as we heard in an earlier phone call, an advance directive or your end of life wishes written in a living will can be disregarded by paramedics or your living center, your nursing home or wherever you are, what is it about the contract for compassionate care that will be better than that? Will alert people to exactly what it is that you want for the end of your life?
EILEEN FITZPATRICK: Well, the contract for compassionate care, in step one, lists all of the options that you do have at the end of life and this educates people as to what their various choices may be. And then the paperwork that you fill out says what your choices of that are. And many people are just unaware of the options that they do have, and this makes clear what you can do and at what point, like when in time you can do it. And I think that will help in situations such as this. And it’s already beginning to be the case that doctors no longer think that the standard of care is to do everything. That’s been the case historically that they feel like if they don’t do everything they can, they’ll be sued and they’ll be liable. That is already starting to shift. And states have passed laws to codify that and make that to be the standard, the new standard of care, to follow the patient’s wishes whatever they may be.
CAVANAUGH: I’m wondering, Eileen, if, indeed, a nursing home or another facility resuscitates a patient that has a do not resuscitate or has – puts an extreme measures to bring somebody back to consciousness if they’ve had an event like choking on the food that you described earlier, are there any legal consequences at all for disregarding those advance directives?
EILEEN FITZPATRICK: There can be but you have to bear in mind if there’s any ambiguity whatsoever, the doctor is going to act in favor of life. A typical situation would be the patient arrives in the ER, say, under distress, the doctor is told, oh, the patient has a DNR order but the DNR order is not there, the doctor has to resuscitate and has to do heroic measures. A verbal, telling him verbally that the DNR order exists but not seeing it isn’t sufficient, the doctor has to do lifesaving measures.
CAVANAUGH: I see.
EILEEN FITZPATRICK: Those kind of gray areas are always going to be interpreted toward life.
CAVANAUGH: Towards life.
EILEEN FITZPATRICK: But if the doctor has seen the order and then does heroic measures, in that case then there might be liability.
CAVANAUGH: And, Jeanne, we’re running out of time. I wonder, the – in the title of your book, “A Better Way of Dying,” do you believe that we actually are moving forward to a better way of dying?
DR. JEANNE FITZPATRICK: I hope so, and I do think so. We haven’t really faced this problem until fairly recently. We’ve been just fine with pushing back death and the conquering of death, and I think as we move forward, we are going to make the changes that Eileen just mentioned and it is getting better but slowly. I hope that our book will help for a lot of people. You know, one of your callers talked about how no one has done their advance directives at a young age, and even worse is the people who have done the advance directives and not talked with the people who are…
DR. JEANNE FITZPATRICK: …going to be involved in their care.
CAVANAUGH: Well, I want to thank you and I want to tell everyone once again that the name of the book is “A Better Way of Dying: How to Make the Best Choices at the End of Life.” And Jeanne and Eileen Fitzpatrick, thank you so much for being with us.
EILEEN FITZPATRICK: Thank you.
DR. JEANNE FITZPATRICK: Thank you, Maureen.
CAVANAUGH: And if you’d like to comment and post your comment, if you didn’t get a chance to talk to us on the phone, go to KPBS.org/thesedays. You’ve been listening to These Days on KPBS.
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