Atul Gawande: Modern death and dying

An article in The New Yorker by Atul Gawande on how modern clinical medicine has turned death and dying into an experience we would not wish on our enemies. This is so much in need of being said. And heard, discussed, and acted upon.

Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop. …

Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.”

People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.

For all but our most recent history, dying was typically a brief process. … Dying used to be accompanied by a prescribed set of customs. …

These days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition—advanced cancer, progressive organ failure (usually the heart, kidney, or liver), or the multiple debilities of very old age. In all such cases, death is certain, but the timing isn’t. So everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost. As for last words, they hardly seem to exist anymore. Technology sustains our organs until we are well past the point of awareness and coherence. Besides, how do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are? Is someone with terminal cancer, dementia, incurable congestive heart failure dying, exactly? …

When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this? …

All-out treatment, we tell the terminally ill, is a train you can get off at any time—just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and to escape a warehoused oblivion that few really want.

Update 8/5/10:
Ask the Author Live: Atul Gawande (The New Yorker)

From Gawande:

In talking to clinicians about why we so often fail to be effective at the end of people’s lives, I was often told: My patients expect too much. Their families are unrealistic. They’re in denial.

But I came to think: isn’t that just human nature? Isn’t that how I would be when I’m told I have an incurable heart condition or cancer? It seems to me our job in medicine is to just deal with it. If we have to wait for people to stop yearning for the long tail—for the lottery ticket—in order to help them, we will be hurting a lot of people for a long time to come. Instead, we need to become more effective in using the techniques that experts already have for walking people through these moments in their lives. … The failure of our system is that we are not good at helping people sort out what is most important to them when they are dying and then helping them achieve it.

And this amazingly encouraging post in the comments that follow the live exchange. The writer’s 75-year-old father is a smoker with lung cancer, taking a drug called Tarceva that makes him very sick. Her/His parents were reluctant to talk about any end-of-life issues. And then she sent them the Gawande article.

I sent your article on Sunday and they called me last night to thank me and to say they plan to bring up hospice and ending the Tarceva at his next doctor’s visit. They sounded so relieved and clear, and thank goodness. I’m sure your article will have a positive affect on many families. Thank you.

Atul Gawande New Yorker Article “Letting Go“ (GeriPal)

There’s always a high level of posts and discussion at this site, written by people who have considerable experience with end-of-life issues

I was trained by the physicians mentioned in the story (Block, Marcoux, Morris, Nowak, and even Gawande for a day). These are some of the best physicians in the world. And yet these stellar physicians – including Susan Block, perhaps the world’s foremost communication specialist – struggle to talk with patients and family members about the one clinical event everyone is 100% going to experience: death.

REALLY Letting Go: Beyonde Gawande (GeriPal)

Another GeriPal post. A little optimistic, perhaps, but it’s so important to get this discussion going.

How should we deal with this fear [of death]? What’s missing from this discussion is also missing from the usual clinical encounter, because it’s missing from medical training, because in turn it’s missing from our culture. Let’s face facts: as a tool for dealing with dying, scientific knowledge has failed us. Doctors talk tech, patients talk life. …

We need something more like wisdom: a vital, living wisdom that is the product of an inner process that each person must pursue individually to become fully aware. The process we must undergo to be truly helpful is the work of confronting our own fear of annihilation, our own personal demons, our own pain from losing so many people we have loved. What else would cause doctors to lie about prognosis to the patients they have known the longest? …

The impending train wreck of US health care is forcing us at last to confront the limitations of life. … Let’s go beyond the dilemma. Let’s talk, openly and honestly, doctors, nurses, patients and families, about how we can handle this together. Let’s get comfortable with the notion that some things just can’t be fixed, and in an ultimate sense, that’s fine. Let’s find out together what’s on the other side of despair. Let’s make self-awareness a goal of medical training. Let’s let in the deep grief and profound joy that dawn in us as one unified experience when we allow ourselves to be truly present with suffering. If we do the REAL work of letting go, the system will take better care of itself, and of the dying, because it will finally have come alive.

Atul Gawande Checks Out Hospice and Palliative Care (Pallimed)

And as a final commentary, -2 points to The New Yorker for uninspiring ’empty bed/chair’ imagery to lead into the article. -3 bonus points for extra creepy ‘Happy Birthday’ balloon. To use a cliched image like this to lead an article with themes of death just reinforces the isolation, despair, hopelessness and ignores the life and joy that can come near the end of life with good support.

Death Is Not the Enemy (Medpage Today, George Lundberg)

I believe that all people deserve a death with dignity and without pain. Palliative care is the right mode for as many as 80% of all Americans who will die of chronic progressive incurable diseases. Eighty percent of those state that they do not want to die in a hospital and especially not in an intensive care unit.

Yet, that is exactly what does happen to so many Americans, often against their will. Some knowledgeable people have even designated the common American practice of aggressive intervention in patients who are truly hopelessly ill as a form of assault or torture.

Sources:

Image source: Encyclopedia of Death and Dying

Atul Gawande, Letting Go, The New Yorker, August 2, 2010