Nobody wants to talk about it

It’s the new Great American Conspiracy, the game of eternal youth. A little plastic surgery here, personal trainer there, here a test, there a scan, everywhere denial again. Death is optional, isn’t it?

Doctors are the happy co-conspirators in the game. They can always fix things up, can’t they?

Well, no. But a new study shows that doctors are just as happy to put off talking about end-of-life issues as their patients. This means that discussions get put off until they are beside the point because the patient died. Which saves all those uncomfortable moments… even if by the time he or she dies the patient has suffered distress that might easily have been avoided, the doctor has likely ordered expensive, agonizing, unnecessary tests and procedures (after all, isn’t the mandate always to treat, no matter what?) and friends and family are left emotional wrecks. All because it’s easier to be in denial than consider the possibility that we might actually — gasp — die.

It’s a conversation that most people dread, doctors and patients alike. The cancer is terminal, time is short, and tough decisions loom — about accepting treatment or rejecting it, and choosing where and how to die.

When is the right time — if there is one — to bring up these painful issues with someone who is terminally ill?

Guidelines for doctors say the discussion should begin when a patient has a year or less to live. That way, patients and their families can plan whether they want to do everything possible to stay alive, or to avoid respirators, resuscitation, additional chemotherapy and the web of tubes, needles, pumps and other machines that often accompany death in the hospital.

The right time to bring up these issues is today. When you’re 26. Or 52. Or 78 and feeling okay. Once someone is terminally ill it’s a whole new game, but to postpone talking about it, to behave as if never uttering the D-word means you’ll still live forever at that point is both foolish and costly. The reality is that we do postpone the conversation. But once a diagnosis suggests a foreseeable end to the living-forever fantasy the discussion should, for those very good reasons above, begin that day.

But many doctors, especially older ones and specialists, say they would postpone those conversations, according to a study published online Monday in the journal Cancer.

It’s not entirely clear whether these doctors are remiss for not speaking up — or whether the guidelines are unrealistic. Advice that sounds good on paper may be no match for the emotions on both sides when it comes to facing patients and their families and admitting that it will soon be over, that all medicine can offer is a bit of comfort while the patient waits to die.

Dr. Nancy L. Keating, the first author of the study and an associate professor of medicine and health care policy at Harvard, said not much was known about how, when or even if doctors were having these difficult talks with dying patients. But she said that her research team suspected that communication was falling short, because studies have shown that even though most people want to die at home, most wind up dying in the hospital.

The researchers surveyed 4,074 doctors who took care of cancer patients, instructing them to imagine one who had only four to six months left, but was still feeling well. Then the doctors were asked when they would discuss the prognosis, whether the patient wanted resuscitation or hospice care, and where he or she wanted to die.

The results came as a surprise: the doctors were even more reluctant to ask certain questions than the researchers had expected. Although 65 percent said they would talk about the prognosis “now,” far fewer would discuss the other issues at the same time: resuscitation, 44 percent; hospice, 26 percent; site of death, 21 percent. Instead, most of the doctors said they would rather wait until the patients felt worse or there were no more cancer treatments to offer.

How much worse are patients supposed to feel? How many treatments will be offered, for how long, at what expense in dollars and in human suffering?

If doctors were honest about the pain, distress and discomfort involved in end-of-life treatments, if patients could be informed and then clear about what they would choose, if friends and families could be open, the savings in dollars and in human suffering would be immense. Sarah Palin didn’t want you to talk about it. Is she still calling the shots?

Second Opinion – Doctors Often Delay Conversations About Death With Terminal Patients – NYTimes.com.

3 responses

  1. i’m not sure doctors are trained for these discussions. every thing they’ve ever learned has created the mindset that they are healers, not pain-mitigators or, even worse in their eyes, end-of-life managers.

    it would seem to me that nurses are better equipped for this job. and they should be given extra training so they can be as effective and empathetic as possible. i’m just not sure that doctors, even with the proper training, are up to the task.

    • You are sadly right that (many) doctors are not trained to have end-of-life discussions and (many) nurses are better at them. But doctors do take an oath to “first, do no harm.” Terrible harm is done every day, every hour, to dying patients whose suffering is prolonged by futile interventions, patients who never understood their options or, in the worst cases, had their own choices denied. Until all medical professionals learn to confront mortality (theirs, mine, yours) and to believe not just in the forever prolongation of life but in helping provide a humane and compassionate death this piece of our dysfunctional health care system will continue to be costly in terms of both dollars and human suffering.

  2. Pingback: Tweets that mention Nobody wants to talk about it - Fran Johns - Boomers and Beyond - True/Slant -- Topsy.com

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