Talking About Death is the First Step Towards Accepting It
Recently we came across this outstanding 2010 New Yorker article entitled “Letting Go,” written by surgeon and public health researcher Atul Gawande. In the article, the author takes an in-depth look at how Americans and the healthcare industry fail to face issues of death and dying. In the long run, Gawande says, this failure comes at a high fiscal cost and sacrifices patient’s quality-of-life in their important final moments.
Medical Advances Have Changed How We Think About Dying
Historically, Gawande notes, death usually came quickly. Patients didn’t linger in hospital beds, kept alive by a variety of machines. Instead, when illness came, people either survived or they didn’t. Today we have any number of expensive treatments capable of extending a sick person’s life well beyond its natural end. To the point where caring for people with a terminal diagnosis is often more expensive that curing patients. Gawande offers this example as illustration:
“Medical spending for a breast-cancer survivor, for instance, averaged an estimated fifty-four thousand dollars in 2003, the vast majority of it for the initial diagnostic testing, surgery, and, where necessary, radiation and chemotherapy. For a patient with a fatal version of the disease, though, the cost curve is U-shaped, rising again toward the end—to an average of sixty-three thousand dollars during the last six months of life with an incurable breast cancer.”
In addition to the increased cost of caring for terminal patients, Gawande says doctors are finding that many of their terminal patients have never articulated their wishes regarding the circumstances of their own deaths. And as a result, many of these patients end up clinging to life in ICU units. Evidence also suggests that fighting too hard to stay alive can actually decrease your quality-of-life in the long run.
“In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression.”
So to summarize, medical care has become so good, that the definition of ‘dying’ has changed. Patients no longer have a roadmap for recognizing, accepting, and moving through their own death. As a result, patients too-often fall back on expensive end-of-life treatments that offer no real hope of a cure, while at the same time compromising their quality-of-life. This is the problem hospice care seeks to address.
Hospice Care Offers a Different Focus
Hospice care developed as a means of addressing the gap between medical care and accepting an inevitable death. One hospice nurse Gawande spoke to articulated the gap this way:
“In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focussing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while.”
The author puts much of the blame for this failure on himself and his fellow doctors. Too often, he says, doctors have a difficult time speaking frankly with terminal patients who feel naturally compelled to hold on to every last hope. These doctors see little harm in indulging what they see as fantasy, pursuing every experimental trial available while their patients suffer the whole time.
“We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win.”
But it doesn’t have to be this way. Research shows that patients who have deliberate conversations with their doctor regarding their wishes for their own death fared better than patients who didn’t have similar conversations. Gawande says:
“…[P]eople who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.”
So how does we disrupt this terrible cycle? Gawande suggests it might be as simple as answering just a few questions.
Thinking Deliberately About Death
Many hospitals are now asking patients to answer four simple questions before they undergo a medical procedure. They are:
- Do you want to be resuscitated if your heart stops?
- Do you want aggressive treatments such as intubation and mechanical ventilation?
- Do you want antibiotics?
- Do you want tube or intravenous feeding if you can’t eat on your own?
Doctors find that once patients are presented with these simple questions, they begin to consider more carefully their own wishes. This then allows them – and their families – to make care decisions that are more consistent with those wishes. Gawande also notes that doctors must be willing to have long and often difficult conversation with their terminal patients, when often, continuing futile treatments would be an easier course of action.
What Do You Want
Gawande ends his piece with a powerful anecdote about one of his own patients – a young mother with a terminal lung cancer diagnosis – who’s family realized too late that her death could have been handled differently. It rightfully leaves the reader wondering what their own wishes would be under similar circumstances.
For more information on hospice, you can read our recent post, “Addressing Common Misconceptions about Hospice Care” or you can visit the National Hospice and Palliative Care Organization. If you live in the greater Phoenix area and would like to talk to someone about the hospice process, you can call Southland Hospice at (602) 497-4100. Death is never easy to face, but as Gawande’s article shows, talking about it is the first step towards acceptance.