Translator: Reiko Bovee
Reviewer: Ellen Maloney I'm going to die. And the people sitting next to you,
they're going to die. And you yourself
are definitely going to die. And that's not the bad news. The bad news is that most of us
will spend the end of our lives, going in and out of the hospital
getting treatments that don't make us feel better,
that may not prolong our lives, and in some cases,
may actually shorten our lives. 20 per cent of us or more
will die in an intensive care unit. We've spent the last 40 years
trying to improve care at the end of life, and by some measures,
things are actually getting worse. Now, if you ask people
how they want to die, most of us would say,
"Quickly and painlessly." I call this the "off-button
theory of death." We will do fine; we'll be going along,
and all of the sudden... That's not likely, really. I mean people do die that way. We can die in our sleep,
or at work, or on the golf course, but we have automatic defibrillators
in theaters and shopping malls; we have emergency rooms, ambulances; we even have implantable defibrillators
for people who are at risk. And as a result of all of this progress,
most of us over the age of 40 and almost everyone over the age of 65, will die of a chronic, progressive,
incurable, and life-limiting illness like metastatic cancer, emphysema,
congestive heart failure, cirrhosis, or dementia. All of these illnesses are treatable, and people with them live longer
and better than ever before. But all of us die of something; most of us will die of one
of these illnesses. The chemotherapy will no longer work; the cardiac interventions
will stop being effective, or our dementia will progress to the point where we can't walk
or talk or even swallow. And, so, if we don't die quickly,
most of us would prefer to die in a peaceful, comfortable,
and dignified way at home surrounded by our loved ones. We've been encouraged,
for the past 30 years, to complete advance care
directives, living wills, that tell our family
and our doctors of our desire to avoid invasive, unnecessary,
and ineffective treatments at the end of life. But as I said, this hasn't
worked out very well. I mean, why is that? I've dedicated my whole career
to try to improve care at the end of life. And I have come to the conclusion that the main barrier to a more humane
and rational approach to dying is hope. I mean, all of us have this sort
of vague notion of good death, doctors and patients. But when faced with the actual type
of life limiting illness that most of us will die of, we don't turn to that idea
of a good death as consolation; we turn to hope. And hope becomes the way
we take our idea of dying and put it in a box and close the lid
and lock it, and push it into the corner, far away from our life,
from our idea of living. That's because we do want a peaceful,
comfortable, and dignified death, but we don't want it quite yet. (Laughter) We want a peaceful, comfortable,
and dignified death later. (Laughter) For now, we want hope. And we've become so good at using hope to lock dying away
in a little box called "later," that we don't even know
the meaning of the word "dying," even doctors don't know
the meaning of that word. Let me give you an example. Let's talk about a patient named Lisa. Lisa is 62 years old, and was recently
diagnosed with bladder cancer and unfortunately,
at the time of diagnosis, that cancer had already spread
from her bladder to her lymph nodes and into her lungs. She's been told
that this cancer is not curable. But if she accepts medical therapies,
she might have two years to live, even a little bit longer if she's lucky. Without those treatments,
or if the treatments don't work, she might have a year or less. She's completed a living will,
an advance directive that says if she's terminally ill,
if she's dying - those terms are used - she wouldn't want artificial life support. Right now though,
she's feeling pretty good. I mean she's getting chemotherapy;
she's tolerating it well; she's working part time; she goes out
to dinner with her friends and families. She's actually in New York, seeing a play. So, here's Lisa, one or two years to live,
in New York seeing a play. Is Lisa dying? So, everybody in this room, if you think
Lisa is dying, raise your hand. And if you think she's not dying,
raise your hand. If you are not sure, raise your hand. (Laughter) I bet a bunch of you are thinking, "Well, if I was Lisa or a family member,
I'd ask her doctor." I'm here to tell you,
if all of you were doctors, even if you were oncologists
or oncology nurses, you would disagree just as much. Even if you were palliative care doctors,
if you were hospice nurses, you would still disagree. I mean that's sort of weird, isn't it? Why is that? What do doctors
learn about dying anyway? Well, when we're in medical school,
we definitely learn about those illnesses that most people die of. We learn about congestive heart failure,
we learn about cancer, we learn about emphysema,
we learn about dementia, and this is what we learn; we learn what causes them;
we might learn how to prevent them; we learn how to diagnose them;
we learn how to treat them; we might learn a little bit
about new avenues for research. But, nowhere in the entire curriculum,
do we learn how people die of them. Nowhere. One of the residents I work with
was telling me how hard it was for her to take care of patients
with terminal illnesses in the hospital. She felt concerned that they did not seem
to understand their prognosis and were often getting treatments
that caused them more harm than good. So, I asked her if, when she
was in medical school, she ever learned how people
die of cancer, for example. She said,"No," she've never learned that,
and I asked her, "Why not?" She thought about it a minute and said, "I guess we're supposed
to do something about it." I mean, what does that even mean? Of course, we're supposed
to do something about it. We're supposed to help people live longer; we're supposed to have them
live better, to feel better. But are we supposed to cure death? I mean there are hundreds,
even thousands of papers on the subject
of doctor-patient communication. I've written some of these papers myself, and they are all about how to teach
medical students and residents and practicing doctors,
how to break bad news, how to communicate more effectively
about end-of-life care, how to make decisions about that. But what if the problem is
that we can't communicate well about end-of-life care, about dying, because we can't even
think clearly about it. We can't think clearly about it because we never
even learned what it is And we don't learn about it
because somewhere inside of us, we don't really believe
that dying is part of living: all evidence to the contrary. And the hidden curriculum
of all of this is that we learn, that our only job is to create treatments that prolong life
that bring people hope. And that is our job. But, there's a problem
if it's our only job. So, let's go back to Lisa. When Lisa was first diagnosed with metastatic bladder cancer,
with incurable cancer, she's very anxious,
she's overwhelmed, she's frightened. And she says
that what she needs is hope. When she goes to her doctor,
they give her hope. She now has hope
in the medical treatment they offer. She has hope that there
might be new research that would help her fight
her disease even better. She has hope that the war
on cancer can be won; she has hope in her own skill
as a fighter, as a warrior. As a result of this hope, she feels
a lot better; she is much less anxious. She feels that she's back
in the land of the living and farther away from that scary
and mysterious place we call "dying." "He gave me hope,"
that's one of the best things a patient can say about their doctor. "Don't take my hope away,"
is what they beg of us near the end. But there's something odd about hope. I mean nobody in this room hopes
that the sun is going to rise tomorrow. We never hope that because
it never occurs to us that it won't. When we're well, we don't hope
that we're going to live till tomorrow or next week or even next year,
because we just assume we will. It's when we're faced with a life-limiting illness,
a serious illness that we need hope. We need hope that we're going to live because we're afraid
we're not going to live and we're using that hope
as a shield against that fear. And so, hope is not really
the opposite of fear; it's the other face of fear. And here's the problem with hope. When we're faced
with a life-limiting illness, if what sustains us is hope,
our will to fight, our belief in medical progress,
our hope that we'll live longer, that hope, every single time,
in every instance, must eventually fail. Because we're all mortal. The closer we get the end of our lives,
the more fearful we become, the more we need hope
as an antidote to that fear, the more that hope
gets attached to interventions which have less and less
of a chance of succeeding, and more and more of a chance
of doing harm, but we do them anyway because we can't stand to give up hope. Right now, all around the country, there are people
in their doctors' offices, in emergency rooms, and hospitals
and ICUs, having conversations like the one I had with Mary. Mary's husband, Bill, had cancer
which started in his lungs, but it spread all over his body,
and now was actually in his brain. He couldn't get out of bed
without a lot of help, and in fact, he could no longer talk. Every time I went into his room,
he burst into tears. I was there to talk to her
about a "Do not resuscitate" order and about hospice. Mary was very distressed
by the conversation. She told me Bill always had hope
that his cancer could be cured. She told me Bill was tough,
he was a fighter, and he always said,
"I'm going to beat this thing." Mary did not want to give up. She did not want to let Bill die. This discussion of hospice
felt to her like losing hope. So, I asked her if when Bill
was able to speak, if he had ever accepted his diagnosis, and she told me, "Oh, no.
He could never accept that. He always said, 'How could this
terrible thing be happening to me? Why is God punishing me so?'" Illnesses like cancer cause
a tremendous amount of suffering for those who have them. It is another form of terrible suffering to be losing someone you love so much. But the hope that sustained Mary and Bill was causing additional suffering,
optional suffering, unnecessary suffering; it is optional and unnecessary suffering to believe that you are being singled out
for punishment when you are dying like all of us eventually will. It is optional and unnecessary suffering to believe that you're quitting
or giving up or losing when you were reaching
the natural end of an incurable illness. And it is optional, unnecessary suffering to believe that you are
letting your loved one die when they are just dying. Death is not a battle we have lost. Death is not a failure of will. Death is not something we let happen. Dying is living. In fact, if you think about it, hope and fear are emotions and thoughts, the thoughts we have about the future,
about something that might happen to us. But that actually raises the question,
a question about the present: What should we do with the time we have? One of my patients was telling me
how upset she was with her oncologist. She had metastatic cancer,
but she had done very well for many, many years
until the last six months when her cancer was continuing
to progress despite all the treatments. And her oncologists now told her that he had no more
therapies to offer her, and that in fact, he felt
that if she got any more chemotherapy, it would shorten her life
rather than prolong it. Rose told me, "Why doesn't he
just do it anyway? I can't stand to do nothing.
He's taking away all my hope." So, I asked her, "Rose, you fought so hard
to live even a little bit longer. What do you want to do
with the time you hope to get?" And she stopped for a minute,
and then she looked at me and said, "If I lived longer,
I could get more chemotherapy." (Laughter) The purpose of life is not
to get us more chemotherapy. (Laughter) The purpose of any medical therapy
is to get us more life. But there's no guarantee
that the life we hope to get will be meaningful to us,
will bring us joy, if we don't give at least some thought
of what we want to do with our lives, if we don't, in fact, start to be present
for the life we actually have. Here's the really good news: The good news is that that thing
we're fighting so hard for; the object of all our hope is something
we actually have right now, all around us, our life. I mean that new therapy that might
buy us a little bit more time, two weeks, two months, two years. if it's successful, will get us
what we already have. But, if we focus all our energy
on our hope for the future we might forget to live the life
we actually have. Everybody needs hope. Hope is vital. But all of us are mortal. Death is certain; its timing is uncertain. And each day we live brings
us one day closer to death. So, we need a better hope.
We need a wholehearted hope. A hope that embraces all of our life, a hope that understands
that dying is really part of living. That's a hope we need right now. We don't need to wait for that hope
for when we are seriously ill because I'm here to tell you
there is no terminal illness that allows you to stop time,
rearrange your priorities and go do your bucket list. (Laughter) What you're doing right now,
this is your bucket list. I hope you're enjoying it because what you did yesterday,
what you're doing today, what you're going to do tomorrow
is your bucket list; it's the only one you will ever get. Here's the good news: If we can have that wholehearted hope, if we can accept that dying
is part of living, we can live a fuller
and richer life right now. Everyone in this room
has enough time, enough money, enough health, enough food to be here together today. As Jon Kabat-Zinn likes to say "As long as we're breathing,
there's more right with us than wrong." And so actually we're really very lucky no matter what types of stress
or problems we actually have. I don't hope for us to live forever
because that's not possible. I hope that we can fully live together in this real and beautiful world where all the dying people
are living right up until the moment,
the last moment of their life. Thank you very much. (Applause)
