Doing a good job when breaking bad news to patients

by Carolyn Thomas   ♥  @HeartSisters

Many of my Heart Sisters readers have told me over the years that they can precisely recall, word for word and even decades later, how doctors delivered bad news about a medical crisis. And these bad news conversations are recognized by medical researchers as “distressing and highly emotive tasks” for our physicians, too.(1)

An interesting study on this topic involved surveying young doctors at two Boston universities. Researchers asked the doctors to describe their first ever experience of breaking bad news to a patient.(2)   I found some of these  responses alarming!

For example:

-most (73%) of the medical trainees surveyed had first delivered bad news to a patient while still a medical student

-for this first encounter, most (61%) knew the patient for just hours

-fewer than 60% engaged in any planning for this encounter

-a more senior physician was present in only 5-10% of the first encounters

-65% percent debriefed with at least one other person after that first encounter, frequently with a lesser-trained physician or a member of their own family

-the most frequent type of bad news described included fatal diagnosis, serious diagnosis, death of a patient or failure of treatment

Personally, I was stunned by the percentage whose first experience of breaking bad news was when they were still med students. While some students may be intuitively compassionate and skilled communicators (and equally importantly, have had enough supervised training and life experience), horror stories like the one described by the late Dr. Kate Granger can tell a far different story.

Dr. Kate was a young physician in England whose practice focused on taking care of elderly people. She was diagnosed with cancer, and sadly, she died on July 23, 2016 – five years after her diagnosis. But during those years, she not only went through cancer treatments, but also left a legacy directly sparked by the doctor who told her that her cancer was incurable.

Here’s how she described those terrible moments:

“Imagine my position:  I’m 29 years old, I know I’ve got cancer, I think it’s confined to my abdomen so I’m expecting to have an operation, maybe some chemotherapy and possibly a cure. I’m in pain and alone.

“A junior doctor comes to talk to me about the results of the MRI scan I’d had earlier in the week. I’d never met this doctor before. He came into my room, he sat down in the chair next to me, and then looked away from me. Without any warning or asking if I wanted anyone with me, he just said, “Your cancer has spread.”

“He then could not leave the room quickly enough, and I was left in deep psychological distress. I never saw him again.”

Dr. Kate was so disturbed by this doctor’s behaviour that she launched a campaign she called #HelloMyNameIs, which ultimately spread worldwide. Her goal was so simple: to encourage her medical colleagues to introduce themselves to their patients. It seems odd that intelligent, educated professionals need reminding about basic common courtesy – but her own experience compelled her to remind them all.

My own worst experience of hearing bad news from a doctor was not just the unexpected shock of learning about my Dad’s incurable cancer, but also the venue chosen to deliver that news – a setting so inappropriate that it’s forever seared in our family’s memory.

My father had been hospitalized for some time with what we were told was persistent pneumonia. We all expected him to fully recover and come home. But our family was suddenly informed of a revised diagnosis: terminal Stage 4 lung cancer which had already spread to his brain, liver, and bones. (He was, by the way, one of the 10-20% of people with lung cancer who are “never-smokers”).  My mother, my siblings and I learned this news from a young man who met us near Dad’s room. Like Dr. Kate’s doctor, he didn’t introduce himself. He ushered all of us into a cramped housekeeping storage closet at the end of the hall. (YES! A closet – filled with push brooms and wet mops). Dad died nine hours after we learned our bad news. He was 62.

This was many years ago. Since then, most medical schools have adopted lessons on teaching clinicians how to  break bad news based on the work of the late Dr. Robert Buckman at Toronto’s Princess Margaret Hospital.(3)  His manual outlines a simple six-step protocol he called S.P.I.K.E.S.  – ideally, to be taught, supervised and practised before med students or interns are told to handle this sensitive communication on their own. Here’s how the Ethics in Medicine team at the University of Washington describes the S.P.I.K.E.S protocol:

Dr. Robert Buckman’s Six-Step Protocol for Teaching Healthcare Professionals How To Break Bad News (or S.P.I.K.E.S.)

S:   Setting –  Getting started  
The physical setting should be private, with both physician and patient comfortably seated (unlike the shockingly dreadful mop closet my own family was squeezed into). Introduce yourself by name and job title. Ask who else should be present, and let the patient decide – studies show that different patients have widely varying views on what they want. *

P:   Perception – Finding out how much the patient knows 
By asking a question such as, “What have you already been told about your illness?” you can begin to understand what the patient has already been told (“I have lung cancer, and I need surgery”), or how much the patient understood about what’s been said (“the doctor said something about a spot on my chest x-ray”), or the patients level of technical sophistication (“I’ve got a T2N0 adenocarcinoma”) or the patient’s emotional state (“I’ve been so worried, I haven’t slept for a week”).

I:   Invitation – Finding out how much the patient wants to know 
It’s useful to ask patients what level of detail you should cover. For instance, you can say, “Some people want me to cover every medical detail, but other people want only the big picture – what would you prefer now?”  This establishes that there is no right answer, and that different patients have different styles.

K:   Knowledge – Giving medical facts 
Decide on the agenda (diagnosis, treatment options, prognosis, supports) before you sit down with the patient, so that you have all the relevant information at hand. Give information in small chunks. Be sure to stop between each chunk to ask the patient and/or family if they understand (“I’m going to stop for a minute to see if you have any questions”). Long lectures are overwhelming and confusing. Translate all medical terms into plain English   See also: Medical Jargon:  Do You Need a Translator?

E:   Explore emotions with empathy – Responding to the patient’s feelings 
If you don’t understand the patient’s reaction, you will leave a lot of unfinished business, and you will miss an opportunity to be a caring physician. Learning to identify and acknowledge a patient’s reaction is something that improves with experience if you’re attentive, but you can also simply ask “Could you tell me a bit more about what you are feeling?”.

S:  Strategy or Summary – Planning and follow-through 
At this point, you need to blend patient/family concerns and the medical issues into a concrete plan that can be carried out in the patient’s system of health care. Outline and explain a step-by-step plan, and discuss the next steps. Be explicit about your own next contact with the patient (“In two weeks, I’ll see you in clinic”) or the fact that you won’t see the patient (“In two weeks, you will see Dr. Diaz in clinic”).  Give the patient a way to contact the relevant medical caregiver if anything arises before the next planned contact.

And a final reminder to all patients and family members:   if a healthcare professional you haven’t yet met enters your hospital room and begins talking about your condition without introducing himself/herself, immediately interrupt to ask: “Who are you?”

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1. Studer, R. et al.  “Physicians’ psychophysiological stress reaction in medical communication of bad news: A critical literature review.” International Journal of Psychophysiology, Volume 120, 2017, 14-22.

2. Orlander JD et al. “Medical residents’ first clearly remembered experiences of giving bad news.” J Gen Intern Med. Nov 17 (11): 825-31.

3. Mirza RD et al.  “Assessing Patient Perspectives on Receiving Bad News: A Survey of 1337 Patients With Life-Changing Diagnoses.” AJOB Empir Bioeth. 2019 Jan-Mar;10(1):36-43. 

Two hands image:  Harish Sharma, Pixabay

* Diagnostic Non-Disclosure:  Remember that some patients were raised in a culture with longstanding traditions of not sharing medical details – even a diagnosis with the patient – but instead with a senior family member (the eldest son, for example) who will then decide on behalf of the family what, when and if to tell the patient. Learn more about tools for handling a family’s diagnostic non-disclosure preferences here.

NOTE FROM CAROLYN:   I wrote much more about doctor-patient communication in my book, A Woman’s Guide to Living with Heart Disease. You can ask for it at your local bookshop (please support your favourite independent booksellers!) or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).

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Q:  Have you had the experience of a doctor breaking bad news to you or your family? What do you remember most – good or bad about that encounter?