Translator: Theresa Ranft Reviewer: David DeRuwe Well, first I need to explain what I'm doing here. I can't actually believe I'm here. I'm a licensed doctor, graduated from São Paulo Medical School, and very early on in medical school I became interested in something a little unusual.
It was very difficult in the beginning, in the early years of my medical practice, because I had different views from other people. There's a poem by Manoel de Barros which I think is so me. He had a girlfriend who said she didn’t see a heron by a river, she saw a river by a heron.
The way of seeing things, the way I was seeing it, was to "unpractice" the rules, as Manoel de Barros so well put it. So, I "unpracticed" the rules because I started taking care of people in their final days. As a resident doctor, my colleagues disliked me because I'd fill my beds with dying patients.
And that made me understand more and more how much medicine had to offer to these people, which was contrary to what everyone said: that those who work in palliative care have nothing to do. In medicine, when you have nothing to do, then you deliver the patient to palliative care. The second most difficult part of my work was actually working in palliative care because in our culture, palliative is something like a quick fix - "You're going to do a palliative.
" - I heard that in class, and it was painful to hear. And palliative, in fact, isn't like covering a loose wire with electrical tape. "Palliative" comes from the Latin word "pallium," which means cloak or blanket, like the capes worn by the knights of the Crusades to protect them from the elements.
And this is exactly what I do. I do palliative care, protective care - protective care against suffering, which is the nature of a serious, incurable disease, with no chance of treatment, of control, that threatens the continuity of life, and is progressive in that person, and, inexorably, leads to death. When we talk about this long definition, I'm talking about the terminality that everyone thinks has to do with time: "They have less than six months.
They're terminally ill. " "They have a week. They're terminally ill.
" Terminality has to do with this concept. It's a serious, progressive disease that is following its natural course. And it produces adversities which we call suffering.
Disease is an abstraction of reality. It's in the books. It's under the microscope.
It's in the definitions, the publications. But when disease finds a human being, it produces a unique melody, which is called suffering. The disease may be the same, but suffering isn't.
Suffering is unique - each person has their own. And suffering has five different tones, five different frequencies. You have physical suffering, which makes a big noise.
It impedes you from hearing all the other sounds from this human being. This physical suffering, in palliative care, is treated with urgency. Because there's a real risk of death if you don't deal with the human suffering.
There's a lot to be done in relation to symptom control. Then you move on to the emotional dimension, which has a different tone, although much more complex, which has a Bach type of quality - very complex, very rich. Medicine is simple, folks; psychology is difficult.
Every human being is unique and will express at that moment the awareness of their finitude. Everybody here knows we all die one day. Does this shock anyone?
It's not a surprise, is it? You don't imagine it could be in two weeks' time from a stray bullet, for example. When we talk about the emotional dimension, there's this pressure to understand, to seek out why this is happening.
In the social dimension of all levels of palliative care, we realize that suffering is separated into four parts: physical, emotional, social, and spiritual. Since I'm kind of pretentious, I like to separate the social into two: the family dimension and the social dimension - because we never get sick alone, we get sick together with our family. We're part of our family, and later we become a sick person in our family, and after we die, a hole is left that needs to be taken care of.
The spiritual dimension is fundamental because it gives us the essence of being human. Spirituality isn't really about being religious. Religiosity is just a way for you to achieve spirituality.
You find spirituality in the way you relate to yourself, in the way you relate to others, in the way you relate to nature, to the universe, and with God. There are those who relate to the universe, and it has nothing to do with God, but it doesn't give this spirituality less importance. We look for meaning in our existence.
There must be the "whys. " And then we can endure the "hows", as Nietzsche said. Palliative care, therefore, treats human suffering in all these dimensions.
Contrary to what's been said, there's a lot to be done in palliative care. We work very hard. Because when I look at a patient, I can't feel frustrated by the fact that there is no cure for their illness.
Because if I graduated as a doctor to take care of people, I can't get frustrated because their disease has no cure. But many people do medicine to treat diseases. There's nothing wrong in this, but this option must be clear to you.
The patient knows by your face when you say to him, "Everything will be fine," and your eyes show the contrary. The patient understands this frustration as "There's no hope for me. " And then, we reflect about the significance of time when we talk about palliative care.
To understand the importance of this work, we have to realize that in a situation like this, where you're in an outpatient clinic at 9 am, and you're attending someone like this . . .
She's really prepared herself for this appointment. She's been waiting 3 or 4 months for it. She'll have 15 minutes, maybe a little less than I have here, to show you the importance of this.
She'll have 15 minutes of the doctor's attention. She's been preparing 3 months, thinking of the most important things to discuss in those 15 minutes. Because part of those 15 minutes will be spent by what the doctor will say to her.
She's prepared, she dressed herself up, put on earrings, a new dress, a hat. Is the one sitting on the other side ready for this? Do they give this the same importance that she's giving it?
Because the time that the two will exchange is exactly the same: the doctor will give 15 minutes of their time, and she'll receive 15 minutes of their time. The only difference between the two characters in this scene is that she has no time to waste. The one sitting on the other side has to understand how important it is that she has no time to waste with someone who doesn't care about a human being right up to the last minute of their lives.
"There's no hope. " We can't possibly offer this to a person who is much more than a body, much more than the biological dimension. When we talk about statistics, we know that, in Brazil, around 1,100,000 people die every year.
We will be part of this statistic at some point in our life. At some point in our life, someone we love very much will be part of that statistic. In Brazil, about 800,000 people die of foreseeable causes.
They die from chronic or degenerative diseases or from cancer. This foreseeable death gives that person a chance to reorganize their own existence and to understand what steps they want to take. And they need someone on their side who understands a chart, a statistic, who does scientific studies.
Because science is brilliant, folks, being a scientist is wonderful, you discover so many good things. You can offer so much to these patients. And science has an interesting characteristic: everything you replicate has quality.
If you treat a million people and find the same result, this is scientific. this is evidence-based medicine. But with art, it's the opposite.
If you replicate art, it's called piracy. Human beings are unique; they're not copies. They can't be replicated.
So you need to find the best that science has to offer, from evidence-based medicine - there's a lot inside palliative care that's consistent, grounded, and technically well-executed. You need to educate yourself and understand the importance of that to offer the best for that patient, so they can get the best out of it. If there's something very ethical to be done in palliative care, it's not doing for the other what you would like for yourself.
That would be silly. You'd do things as if they were for you. The most ethical thing we can do in palliative care with a terminally ill patient is to listen in the way we'd like to be heard.
Then we'll understand what it means to be on a chart when you hold the hand of someone who's included in those numbers. A lot of people ask if it's morbid, if it's difficult to work with death. "Wow!
Your work is beautiful! But it must be very difficult, right? " But I can tell you something: it's one of the most amazing jobs in medicine because you don't suffer burnout, contrary to what's said by many who study burnout.
They say that people who work in palliative care or people who work with terminally ill patients have very high rates of occupational stress, but this is untrue. Those who work with patients who die are indeed stressed because they don't understand what they're doing there. Those who work in palliative care are exactly the opposite and have the smallest possible occupational stress rates, because we learn to value life.
We're not an apology of death. Death isn't pretty. It has a unique, sad beauty.
But death isn't beautiful; life is beautiful. When you go into your office like that, sit in that chair, and look at the patient, look at that person in a different way - as Chico Buarque says, "In a different way that you'd never done before, a warmer way of seeing than you were accustomed to" - then the person knows there's someone who believes in them, that they can handle this; that, yes, they do have little time but that you're by their side. You'll treat their symptoms with the same respect, persistence, dedication, and determination with which you'd treat the cancer or treat their heart disease.
Once you're able to relieve the physical symptoms, the patient has the chance to take care of everything they need to in life - things we leave till the last minute. Is anyone here ready to die today? Don't raise your hand; come talk to me later, and I'll refer you to a psychologist.
Nobody is ready, folks. We always leave things till the last minute, like put on lipstick, brush our hair, use the bathroom before traveling. It's the same with every human being.
We have the illusion that it's the first impression that sticks. But it's not. It's the last.
It's amazing how everybody, in their final days, awakens, pours out that which is the essence of the human being - which is the loving state. The generosity with which these people distribute wisdom, knowledge, and gratitude to those who work in this with dedication - I cannot describe it here. And then we'll live periods that can be filled with much joy, especially because sometimes patients have two joys: one is to live that moment without pain, and the other is to live that moment when they can ask for forgiveness, reconcile with a person they really love and are able to thank them.
They do this once, and they're really happy telling you they were able to do it. They say, "Can you believe that? I did it!
" Then you can resume relationships, redo situations, understand your existence in a way that makes total sense during your final days. Because we know that at the end of a book, we're able to understand a lot that we didn't understand before. Soap operas and movies are the same - they make perfect sense at the end.
And if we're feeling no pain, no difficulty in breathing, no discomfort, fear, guilt, or abandonment, we'll be able to understand the meaning of all this. This lady here was one of those who taught me the most. We spent three months together.
I enter people's lives. It isn't a pleasure meeting Dr Ana Claudia, it definitely isn't. First, because I'm a geriatrician, dealing with that phase of life no one wants to go through.
And then I do palliative care, so it isn't a pleasure because I enter that door that everyone wants closed, which is the one of suffering, disease, death. But once I enter, I start to become a very intense part of that person's life, of that family's life. And there's no way around it, we're human, and we give and take.
And the lessons we receive are indescribable. The day she passed away, I had the chance to say goodbye to her. It was very special because when I was saying goodbye to her, she shed a tear.
I shed dozens, but she shed only one. And it was a tear that falls from the eyes of a person who had the chance to break free from physical suffering, who had the chance to break free from fear, guilt, the loneliness of being in that moment, for having to go through this moment alone, freeing themselves from abandonment, reconciling with their family, being present with everyone for most of their time, admired by all for their courage to face their final days. And then that tear fell, that yes, it was sad - a legitimate sadness, right?
We can't help but feel sad. But it was a pure tear, from the essence of a life that had found meaning in its existence and was saved. So when I speak about palliative care, I also talk about saving lives, except that we save historical lives - life with a capital "L.
" Not a body, not a disease that's healing, but giving people the chance to board first class. In this life, regardless of anyone's religion here, in this life, we only die once. You can't mess it up.
If we get the chance to find professionals who commit their time to the importance we give to our time and place priority on the things that we determine, we'll be very lucky people. And I'd like to add that I'm very happy to know that there are more people who can one day believe that death is a day worth living. Thank you.
