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End of Life Care: 'We're Reluctant to Talk About Death'

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Afternoon dancing at a care home in Berlin: "I learned to ask of my patients what their most important priorities are and what they want to achieve in the time they have left." Zoom
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Afternoon dancing at a care home in Berlin: "I learned to ask of my patients what their most important priorities are and what they want to achieve in the time they have left."

Bestselling author Dr. Atul Gawande's new book focuses on medical care for the dying. In an interview, he speaks with SPIEGEL about end-of-life priorities, when treatment is a mistake and how rules in care homes are made to be broken.

SPIEGEL: Doctor Gawande, are you beginning to feel your age?

Gawande: Without question. I had to switch bifocals this year. I was always near-sighted and now I'm also far-sighted. My 19-year old daughter has started beating me at word games because I just don't process like I used to. While playing tennis, I never had to stretch nor worry about injuries. That's over as well. Overall, it's the kind of little aches and pains that make you think: Yes, I'm getting older.

SPIEGEL: In your book "Being Mortal," you describe vividly what happens when we age: Our heart muscle's performance begins to deteriorate at 30, before the age of 40 our brain power starts to decline. At the age of 60, on average, we'll have lost one third of our teeth. Does your own decline scare you?

Gawande: It's an experience that definitely bothers me. The mental image I have of myself is still the person who was 30 years of age rather than the person turning 50 this year.

SPIEGEL: Four years ago, your father passed away at the age of 76. Did the experience of his death magnify your concerns?

Gawande: Surprisingly, no. It actually helped me. Up until the end, my father had things he loved and cared for. We should consider ourselves lucky to become older than the generation before us. Many of us will become dependent, that's inevitable, but that doesn't mean one can't have a good life. For my book, I talked with a 94-year-old man. Every joint he had was aching. He had to support himself with one of those walkers that had tennis balls on each of the legs. Sometimes, he seemed confused. Yet, he had things he loved about life and that was true of my father as well.

About Atul Gawande
  • Rick Friedman/ DER SPIEGEL
    Atul Gawande, 49, is a surgeon at Brigham and Women's Hospital in Boston. He is also a regular contributor to the New Yorker and the author of three bestselling books. His most recent work, "Being Mortal: Medicine and What Matters in the End," was published in German translation in September.
SPIEGEL: In a blog, your father described how he was meeting friends, enjoying home-cooked meals and working on a book. Only months before his death, it seemed he was a happy man.

Gawande: My father underwent surgery and radiation treatment against his cancer. But even as the disease progressed and he was getting weaker, he found purpose in his life. After the diagnosis, we went on to have five good, though sometimes difficult, years.

SPIEGEL: In the beginning, it didn't look like that was going to be the case. Shortly after the diagnosis, a neurosurgeon pushed for a risky surgery. Otherwise, the surgeon said, your father could become a paraplegic within a matter of weeks. But your father decided against it. Why?

Gawande: At the time, there's was nothing more important to my father than his work as a urologist. He wanted to be able to continue performing surgery. Going ahead with the operation would have risked precisely that -- without knowing whether the procedure would stop the tumor from growing. That's something we as doctors often don't take into account: When our patients run short of time, they have priorities in their life besides just living longer. They want to spend time with their families and friends and they want to do things that are meaningful to them. The most fundamental failing of our system is not recognizing those priorities.

SPIEGEL: How did that realization change the way you see yourself as a surgeon?

Gawande: At medical school we were being taught to be "Doctor Informative". "Doctor Informative" is someone who overwhelms their patients with information, states the facts and leaves it to them to decide. I instead learned to ask of my patients what their most important priorities are and what they want to achieve in the time they have left. This could be a good dinner or not losing their ability to walk. I would still offer options but also advise my patients about how they could achieve their goals.

SPIEGEL: And do you always succeed?

Gawande: Oh, no. It's not always easy to get people to articulate their priorities and their goals aren't always clear. I often fail. It sounds ridiculous: I'm an experienced surgeon, but while researching this book, I sometimes had the feeling that I'm only now learning how to deal with people.

SPIEGEL: Yet, many patients will opt for treatment no matter how slim the chances are for success.

Gawande: There's this urge to fight, to try something, no matter how futile it may be and how much suffering it may bring. Instead of saying: Today, let's just focus on having a good day, patients will risk the last days of their lives, even if they see just a faint glimmer of hope. Often, though, that hope turns out to be a delusion. And then they'll spend their last days in a hospital with tubes in their bodies and in pain.

SPIEGEL: Is it more difficult to forego a treatment rather than to do everything possible?

Gawande: You have to rephrase the question: What are you willing to sacrifice in the course of treatment -- and what are you not willing to give up? I had a patient with an incurable metastatic ovary cancer that blocked her bowel. Operating would have risked causing her more harm than good. When I asked her about her fears and about what she was willing to give up in the time remaining to her. She said, "no experiments." She wanted to enjoy the little time she had left. Then during surgery, when I saw that there was no chance of cutting her bowel free, we decided to ease her discomfort and stop the surgery. The patient died a short while later, surrounded by her family.

SPIEGEL: You also asked your father those questions. You called it "the most difficult conversation of your life." Why? Isn't it natural for those facing death to want to talk about it?

Gawande: Yes, it was harder for me than it turned out to be for my father. And it's often that way with my patients. We are reluctant to talk about the topic of death. But as soon as you open the door and make it OK to discuss, it's amazing how frank and honest people are. When my father was being asked: "When you die, what would you want to have happen to your body?" he immediately had an answer. He told us which funeral home he wanted and the three places where he wanted his ashes spread. To us as a family, it was shocking. You felt that to ask such questions meant you were giving up on him. But he'd been thinking about it for a while.

SPIEGEL: What would you be willing to accept in exchange for a longer life?

Gawande: I'm willing to be "a brain in a jar" as long as I can communicate with people. My wife said that's a stupid idea. She said, "I don't care if I don't recognize you. As long as I look happy and you know what I look like when I'm happy," she said to me, "then it's worth it."

SPIEGEL: What's hard to grasp is that you and your parents are both doctors. Yet it was only when your father discovered he had cancer that you started talking about what matters most at the end.

Gawande: It's strange, isn't it? Even though my father and my mother, who is a pediatrician, have had patients die, we never had a conversation about death. Doctors I guess are just like everybody else. Death makes us uncomfortable. But mostly, I think, doctors don't feel comfortable around people whose problems they can't make disappear. In medicine we're drawn to the problems we can fix.

SPIEGEL: Two-and-a-half years after the diagnosis, your father had surgery after all. What made him change his mind?

Gawande: The tumor progressed slower than the neurosurgeon had thought it would. But my father was progressively losing his ability to walk and he couldn't lift his left arm anymore. His symptoms had reached a point where he was now willing to accept the risks of surgery. It's a question one is always reassessing: How much is one willing to lose in exchange for a gain they care about?

SPIEGEL: Afterwards, you encouraged him to undergo radiation. In hindsight, was that a mistake?

Gawande: Yes, it was. He lost six weeks being in treatment. His neck pain didn't decrease and he lost his ability to taste food. Instead of shrinking, the radiation caused the tumor to swell. I read all the papers, but under conditions of uncertainty one can only try to make the best decision possible. What bothers me is how much the specialists downplayed the side effects of the treatment. Not being able to taste food meant for my father losing something that he most loved.

SPIEGEL: For many people, there comes a moment when they have to move into a care home -- a move that terrifies many. Is their fear justified?

Gawande: In many of these homes, health and safety are the number one priorities. Caretakers will control your nutrition and pills and will help you into a wheelchair when your legs become instable. But the pleasure of being in your own home is that you have a say. So, if you have a diabetic who keeps chocolate in his refrigerator along with cans of soda, it is probably not a smart choice but it is his choice. And just because that person is now in a wheelchair and you own their refrigerator, doesn't mean you can just assume you know what's best for him. That's what horrifies people: losing control.

SPIEGEL: Can the cognitively impaired still make good decisions?

Gawande: In such situations, it becomes more complex. But even then, people can express what matters to them. I met an 85-year-old woman with dementia and diabetes. And nothing gave her greater joy than going out with her friends on a Friday afternoon and sipping a margarita. It was completely against the rules, but the nursing home went out of their way, because they had understood what made life meaningful to that woman. When it's evident that a person doesn't have much more time in this world, just giving them the best day they can have trumps anything else. And if they want a margarita, then that's fine as well.

SPIEGEL: Not all institutions are that flexible, of course.

Gawande: Nursing homes were not built to provide the infirm with a better life. After World War II, when hospitals mushroomed in the industrialized parts of the world, they soon filled up with the frail who didn't suffer from any disease, but from age. Nursing homes were created to empty the hospitals -- as if old age were a problem that could be fixed with enough medical care. But the baby-boomers are not going to be as submissive as the previous generation was.

SPIEGEL: You believe that a new generation of the elderly will protest?

Gawande: It's been fascinating to watch what is happening in the USA. People in nursing homes are reading my book and they're causing heartburn and heartache for the administrators all over the country. I get letters and complaints: "They're not listening to us. They're demanding too much." It's fantastic!

SPIEGEL: Isn't the problem to be found elsewhere? Caregivers often complain about a lack of sufficient time.

Gawande: I think the important question is: Do we want to create a medical institution to keep the old safe, or do we want to create a home? Why don't we allow people to have cats and dogs when we know it gives them a purpose in life? Because it's usually not a caregiver's job to walk the dog when the owner no longer can. But shouldn't that be exactly what a nursing home helps you do: make sure you live a good life all the way to the end?

SPIEGEL: What do you remember the most when you think of those last days you shared with your father?

Gawande: He'd be asleep for a lot of the day, so we were mostly just sitting in his room. When he'd wake up, we'd just talk. Those last five months he lived as a person, and not as a patient. That was a gift I'm tremendously grateful for.

SPIEGEL: When did you realize he was nearing the end?

Gawande: When we signed up for hospice. What impressed me the most was the power palliative care has. The hospice nurse only insisted on two simple things: better pain control and that my father would no longer get up alone, so that he wouldn't fall. What the radiation could not do, the hospice accomplished: His paralysis slowed down. It's paradoxical, but you only live longer when you stop trying to live longer.

SPIEGEL: Doctor Gawande, thank you very much for this interview.

 

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1. The path from being old to become dying
ambabelle 10/08/2015
Bonjour de Paris; Like everybody I am most grateful for these thoughts. With apologies, I do not recognize the World this learned and wise specialist is describing. My father's death was a long fight against incompetence, which finally killed him, my mother's last ten Alzheimer years were a constant fight against the maltreatment at the Institution. My own walk from old to dying is a walk in loneliness alleviated by dog who regretfully is on the same path. I used to feel comfortable knowing that palliative care was available ten miles away until I saw the hallucinations induced by opiates. I hope you do not know what I speak of, hallucinations are a way to understand what the Church describes as "hell". The one thing I learned the day I died was that it is not "I" who died, it is the World that died. For some reason nobody can understand, I did not go the last nano meter to death and had to come back and continue my inning. Doctors tell us that there are not two cancers which are alike, I would suggest that there are not two deaths that are alike. Leaving you a bit to cry, sorry
2. Death
geoklenk 10/08/2015
To die will be an awfully big adventure. The long habit of living indisposeth us for dying. Thomas Browne, Urn Burial.
3. Birth to eternal life
theofile 10/15/2015
My father was born to eternal life some 35 years ago in October after a painful struggle with metastatic prostrate cancer (bones). During his dying process, he returned to his Catholic roots after a hiatus of some 50+ years. Suffering happens to be the cauldron of the spiritual life, and he became a new man in Christ. On the 5th of November of 1979, he experienced the Holy Spirit in a profound and powerful way which completely changed him. You could see it in his face, the joy, the new man. When he died some 11 months later, I knew he was going home to our best friend, and it was truly a birthing. I had to celebrate. How do you give that experience to others?
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