Our hospital staff holds monthly reviews of mortality and the care of patients at the end of life. For those deaths that so clearly come at the end of a long chronic illness, we ask ourselves how we could have done better. Over and over we see a pattern of shared denial — both patients and their caregivers seem to ignore the signs that life is slipping away. Why?
Well, human nature for one. We all thrive on hope. We humans, especially in Western societies, seem to think death is optional. We don’t like to face it, think about it, or plan for it. And medical professionals are trained to always look for the treatment we have missed, the breakthrough that will pull someone back from the brink. We have all experienced amazing recoveries in a few patients, so we tend to constantly strive to find that for everyone — it’s what our patients expect from us. It’s the thrill that we trained for — finding the cause of the symptom, zapping it with a drug or a surgical procedure or a radiation beam, and returning the person to full function.
However, there is good evidence that this optimism and constant search for another treatment make us lousy prognosticators. We typically overestimate a person’s life expectancy at the end of life. [There are plenty of egregious examples of the other error, but in aggregate we overestimate]. We hate to give in, we want to transmit hope.
And the sad reality is that the ‘silver bullet’ is really uncommon. Most of us will die of the gradual loss of functions associated with one or more chronic diseases. It’s not a hidden mysterious rare tumor that can be zapped into oblivion as often as it’s the accumulation of functional loss from diabetes, heart disease, chronic lung disease, or a common cancer we’ve had for a long time and is now back again. These chronic illnesses take away function in a stepwise fashion, and offer many tragic but welcome opportunities to discuss what an individual wants, and what a doctor can offer. Too often, these conversations don’t take place.
They are tough conversations — they are sad. Doctors assume patients notice their declining function and will ‘speak up’ when they have had enough. Patients can get used to declining function, and often assume that doctors can return them to previous levels of function after their disease acts up. This is actually uncommon.
Each of us defines the quality of life we want or will accept. And our thinking may evolve when we develop a severe illness. Care is ALWAYS centered on the patient’s choice. That choice, however, needs to be informed by the best medical facts available. And those facts need discussion before facing an urgent medical intervention.
As I have evolved my thinking about all this, I find that these discussions are easier each time. Patients usually welcome the opportunity to talk. I never know where the conversation will go, but for me, ‘taking care of someone’ means more than the right drug or surgical referral. It means helping people recognize futile care, and giving them a chance to think through what they want. Giving them a chance to cry about the unfairness of it all, to listen to those they love, even to ask for another medical opinion. It means really listening — and then following the direction the patient wants. That means sometimes doing more than I would have wanted to or sometimes stopping treatment before I am ready.
The reward is so clear, however, a deeper trust between doctor and patient. And for many at the end of life — the gift of the opportunity to make the choice to be at home, and stay there, with good plans for managing symptoms, and in the environment they want — around loved ones. That reward is the motivation for doctors and patients to find a way to speak up.