These days, medical students and residents receive formal training in delivering bad news to patients. Still, I know lots of oncologists who would rather offer up a twelfth course of cancer chemo than have a discussion about death. Palliative care doctors and nurses are trained to take up the issue. The challenge though is to make more palliative care services available. Today's med students get more training than I did. Still, surveys suggest that few physicians feel adequately trained to deliver bad news. Even if they receive training, physicians may be used to thinking of giving bad news as a 1-time event - something they do once to "get it over with". The need to keep delivering bad news may cause the doctor to become insensitive or avoid it altogether.
I'm often asked what it feels like being the bearer of bad news. It depends on me and it depends on the patient. Some patients seem focused only on treatment and the possibility of cure. It's as if talking about dying is like mentioning the elephant in the room; doctor and patient may avoid it at all cost. Other patients are more serene. Sometimes, they already know because of the way they feel and you almost don't even have to tell them.
However patients take the news, if you're their family doctor and you've known them for years, it can be very painful. You're attached to your patients and you don't want to say goodbye to them. If they're the same age as your parents, you might be reminded of the situation in your own family. If the patient is your age, maybe you start thinking about your own mortality. If there's an unresolved issue of a missed diagnosis or a medical mistake, as a physician you feel in some way responsible. Sometimes, if it's cancer, you might have discussed the prognosis in an optimistic way. If the patient has the worst-case scenario, it's not uncommon to feel bad that you didn't paint a more realistic picture, especially if the patient is utterly devastated.
So, how do you begin a conversation like that? A wise mentor taught me to always begin by listening to the patient first and talking later. When I'm about to tell family members in the ER that their loved one has died, I'm keenly aware that I'm telling them something that will change their lives forever. This is no place to guess what people know. Asking questions first lets me know how prepared they are to hear bad news.
Sometimes, patients bring up the subject themselves. They may be more willing than the doctor to talk about it. If they don't bring it up, I'm trying to learn what the patient is prepared to talk about. I want to figure out what she knows already about her condition and her prognosis. Even when they don't use words like death or dying, many patients know it on some level. A person with breast cancer who's been through several rounds of chemo knows her body isn't responding the way it did before. A man with prostate cancer or chronic obstructive lung disease wonders whether it's worth it to keep taking active treatment. Once I get a signal that they're ready to talk about it, it's time to talk.
The first rule is to use plain language. Patients and their families get frustrated when the doctor uses technical jargon they can't understand without a dictionary. The doctor shouldn't use inappropriate metaphors like sports or entertainment analogies - for example, telling a patient near the end of life that they're in the late innings or Act IV. When telling family members that their loved ones have died, you never use euphemisms like "terminal event" or "passed" or "passed away". You say that their loved one has died.
Here's a bit of black art about informing next of kin. If you receive a call from the hospital to come right away, there's a really good chance your loved one has already died and the doctor or nurse wants to let you know face to face.
When you're giving the patient or family members bad news, you find a quiet place away from prying eyes and ears. You sit down and you make eye contact. You speak in plain terms. Then, you stop and give them a chance to process the information. Most people will want to vent their feelings. It's really important to let them. Like most people, health professionals may not like seeing public displays of strong feelings. I think we fear being blamed for a loved one's death. As health professionals, we must put aside our discomfort and acknowledge the feelings we are witnessing.
If a patient or family member says "I don't believe it" when given bad news, the absolutely worst thing to say is "well, if you don't believe me, I can show you the CT scan!" What we should do instead is acknowledge the patient's disbelief by say something like "I know this must be a terrible shock for you," or "I know this must be utterly unbelievable for you." In my experience, after two or three expressions of disbelief, most people begin to accept the news.
Discussing prognosis is one of the most challenging parts of talking about with patients about dying. If you're told your chance of surviving a year is less than five percent, that prognosis is a probability based on the average survival of a group of people with the same disease at the same stage. Doctors should never fudge the facts regarding statistics. However, it's important to be clear that statistics don't tell me when an individual patient is going to die. Medical science is full of examples of people who live well beyond the norm based on statistical probabiilty.
Health professionals should never make a prognosis sound like a death sentence. In our efforts to tell patients the "truth", sometimes, we can be quite stark in giving out that sort of information. We should never take away hope. There is always something realistic to hope for, even near the end of life. For instance, instead of hoping for long life, one can hope for being kept comfortable, or for having time to spend with family and close friends. However we speak to them, the most important thing about telling a patient they're dying is to never abandon them. That's what patients fear the most.