I saw a piece describing an insider’s perspective on the challenges of doctors not communicating effectively to their patients when informing the patient that he/she is terminal. Make sure to also check out the doctor’s original article as well.
Plain Speaking at the End of Life
By PAULA SPAN
Dr. Stephen Workman, an internist at the Queen Elizabeth II Health Sciences Center in Halifax, Nova Scotia, takes exception to the language physicians use with patients near the end of life. In one of his recent publications, he called language the most important tool health professionals have to improve the care of dying patients.
I wanted to know more about his ideas, so we spoke by phone.
Q. You’ve decried the way hospitals and their staffs treat the dying, calling it “an avoidable tragedy.” Why does that happen?
A. The system is geared for intervention. The narrative of medicine, the stories doctors love to tell and patients love to hear, is that we can identify the problem and fix it. It’s hard to say when that’s no longer true, but there comes a time for all of us.
If physicians challenge their belief that they can cure everyone, they will identify a lot of people who are dying or at risk of dying. And generally care gets pretty rational after that. Once we recognize that someone is dying and that dying people have a claim upon us, things usually become more humane and compassionate.
Q. Can language make that much difference?
A. You’re always struggling against expectations. Something else can always be done; there’s always another test and another treatment. So it’s important to let people know when we foresee death.
When I see patients who I think are at risk of dying, I say to the family and patient, “You could die during this hospital admission. Is that something you’ve been thinking about?” Then you can go forward and ask, “What have you been thinking, and what are your expectations?” When you plant the seed that death may be the outcome, people have more acceptance.
They can initially be very shocked: “My goodness, I never knew he was that sick.” They need time to come to terms with it. So you give them more time, rather than tell them in the I.C.U. that it’s time to turn off the ventilator.
If you support them and attend to their needs, most patients and families are very accepting.
Q. You specifically say someone is dying?
A. If death is such a terrible thing that I, the doctor, am unable to face it, then I’m asking too much. If I can’t talk openly about dying, how can my patients and their families bridge that gap?
Q. Why do you disapprove of the more standard approaches? Doctors often say someone is “doing badly” or is “seriously ill” or “critically ill.”
A. They’re true. But if you say, “Your father may well die,” you will get a different response. When you tell someone that, you create a moral obligation to deal with the fallout, the tears and grief and anguish.
Attempting to avoid that is like wanting to do surgery but not ever wanting to see a patient bleed. You can’t give honest, compassionate, effective care if you’re not comfortable seeing someone cry, and you’ll never give good care at the end of life.
Q. You’ve written about your preference for telling families that treatment hasn’t been effective.
A. We have to acknowledge the impotence of our attempts at some point. “We’re not winning. The treatment’s not working. She’s dying despite our best efforts.” People understand if you make it clear that treatment has failed. It’s not that we’re giving up; it’s that we really tried, and we can’t save her.
Q. But you’d rather not say, “She’s failing to respond to treatment.” Why’s that?
A. Because it’s shifting responsibility. “The patient is failing to respond” — that naughty patient! As if a good patient would get better. I prefer, “Our treatments aren’t working.” That puts the responsibility on me.
Let’s acknowledge that the human body is incredibly complex and our treatments are simple and only work sometimes. The problem is not the patient; it’s our technology. Let’s be more humble.
Q. Similarly, you don’t speak in terms of “switching to comfort care.”
A. I don’t switch to comfort care. I discontinue any treatments that don’t contribute to comfort. Because if this is the day you’re switching to comfort, what kind of care are you switching from? A patient’s symptoms, like pain or shortness of breath — weren’t those important yesterday?
There is no switch. We are always providing comfort care. We’re going to stop the things that don’t help you be more comfortable. Once you acknowledge that a patient is dying, nobody says, “Continue doing the things that hurt.”