Within 5 minutes of my first day of my neurology rotation, I was given a consult on a 45 year old female who had been drooling for a couple of days. She had gone to the dentist for a tooth implant the week before and ever since she felt like the corner of her mouth had been drooping. The patient dismissed the mouth droop and drooling for a week, but became concerned when her speech began to slur. She figured if the symptoms she was experiencing were due to her dental procedure they should begin to improve with time, not worsen. Upon arrival to the Emergency Room, as per standard procedure, she was sent for a Head CT scan. On my patient’s CT there was some discoloration on the right side of her brain, but we couldn’t be sure if it was blood, an abscess, a cyst, or a tumor so we ordered an MRI to get a better idea of what was happening in this woman’s brain.
Being part of a busy neuro consult service, several hours passed before my attending was able to review my patient’s MRI results. As we were already in the ICU where my patient’s room was, my attending decided to use one of the nurse’s workstations in the middle of the ward to look up the images. As we waited for the computer to finish loading it was almost slow motion as the pixelated image came into focus. There in her right temporal lobe was an unmistakable, baseball sized tumor. The mass was so obvious on MRI, that a layperson would be able to identify it – and unfortunately that is what happened. As my attending logged off of the computer, the patient’s family approached us. The husband had been standing with his mother-in-law, brother-in-law, sister-in-law, and 10 year old son just behind our workstation and had seen the very evident abnormality of his wife’s MRI. Not wanting to beat around the bush, the husband just blurted out, “does my wife have cancer?,” and there in a crowded hallway, my attending confirmed the husband’s fear – his wife had a tumor.
The panic that washed over this family was palpable. There we all stood, the 5 of them on one side of the hall and my attending, myself and two other medical students on the other side of the hall. The husband immediately started firing off questions, “what type”, “what’s the prognosis”, “how do we treat it” – to which my attending said we couldn’t be sure of anything until we get a biopsy. No more than a minute had passed and my attending’s pager went off. He excused himself from the family and we were off to see a new patient. The entire exchange was so casual, I could’ve sworn my attending was talking about sports or the weather, not giving a life-changing diagnosis. Later that day neurosurgery was consulted and the patient underwent a resection the following morning. The pathology report confirmed that the mass was a glioblastoma multiforme, a type of brain tumor that is typically fatal within a year.
Although neurology had transferred the patient’s care to oncology, I couldn’t help but feel guilty. How could my attending have been so nonchalant about delivering quite possibly the worst news a family could ever hear? It’s been nearly two months since I met that patient and I still feel so uneasy about how my attending broke that news. I imagine working at a large hospital that specializes in stroke and neurologic conditions, my attending has had to deliver a fair amount of bad news in his career so how could he have delivered this life-altering news in such a cold and callous manner? While I’m not entirely sure that there is a “right” way to deliver bad news, I do know there are better ways than others. I know because I was with my mom when she received terrible news.
During my second year of medical school I was home for a long weekend to attend a friend’s wedding. My mom had to get some MRIs the first morning I was home. She had taken a bad fall 6 months prior and her doctor was concerned that something was causing her balance to be off. The next day, my mom and I grabbed coffee and ran errands before returning home to binge watch TLC reruns when the phone rang. Answering it, my mom turned on speakerphone so I could hear the result of her MRIs. The nurse on the other end of the line hesitated and then said “the result was abnormal”. The nurse said she was unable to disclose anything more over the phone and that my mom would have to make an appointment; the soonest available was more than two weeks away. My mom was speechless. I stammered that that was unacceptable, we had to be seen today. After a brief hold the nurse said she could squeeze us in later in the day.
As soon as the phone line went dead my mom and I burst into tears. Immediately I started coming up with a differential in my head of all the things that could have caused the “abnormal” result. A cyst? An aneurysm? I tried not to let my mind wander too far but I was so incredibly terrified that the result was going to be something much more devastating – Huntington’s, ALS, a tumor. I felt sick to my stomach, but tried to put on a brave face for my mom and reassure her that everything was going to be okay.
We waited in the exam room for the doctor to come in. The physician hurriedly entered the room and immediately went to her computer to pull up the MRI images. She kept pointing to white spots on the MRI and saying that they were the result of a neurodegenerative disorder. Scan after scan, she highlighted these white spots all over my mom’s brain and spinal cord and kept repeating “neurodegenerative disorder” over and over. My mom and I were baffled. What does a neurodegenerative disorder mean? How do you treat that? What is the prognosis? It took several months, a lumbar puncture, an ophthalmology exam, and evoked potentials testing before my mom was formally diagnosed with Multiple Sclerosis.
Looking back on that whirlwind couple of weeks, I am so frustrated about how my mom’s medical care was handled. Not only was it inappropriate to disclose that there was an abnormality over the phone, but meeting with the doctor in a rushed 10 minute meeting only created more questions instead of providing answers. While an MS diagnosis may be routine for a neurologist, MS has been financially, emotionally, and physically burdensome for my mom. Leaving that initial office visit, my mom wasn’t given any time to process the life changing piece of information she had just been given. Since that day, I swore to my mom I would never rush an important conversation with a patient.
While I wish I could take my mom’s MS away, I am thankful that it has taught me to be a compassionate doctor. Now whenever I approach a patient, I try to think how I’d want a doctor to treat my mom. Granted, as a medical student I don’t have a ton of autonomy, but make an effort to spend as much time sitting with a patient as my schedule allows. I think this is why I felt so helpless when I met my patient with glioblastoma. I felt like I had failed her. When my attending decided to confirm that dreaded result in the hallway, he destroyed any chance of having a meaningful discussion about the diagnosis. I was ashamed that I was a part of that interaction. With that being said, part of the clinical rotation experience is learning what not to do and I think it’s safe to say, this was one of those situations.
So what counts as bad news? How should you deliver bad news? They may seem like stupid questions, but I think they are valid question. It is easy to identify a terminal diagnosis as bad news, but what about other life-changing diagnosis? An attending once told me the rule of thumb is any piece of information that you give a patient that will change his or her life warrants a good discussion. For some patients, being told they have had a heart attack or a stroke can cause a great deal of distress, even if by medical standards the patient is doing well and it was just a ‘minor incident’. For my family, my mom being diagnosed with MS was a pivotal event. It is easy as a medical professional to fall into the monotony that is medicine. Now that I am on my family medicine rotation, every other patient I see has hypertension, hyperlipidemia, diabetes and an elevated BMI. Telling a patient that his A1c level indicates he has diabetes is so routine, it’s easy to just gloss over that I just delivered a life changing piece of information to this patient.
- Don’t sugar coat – this is by far the toughest rule to follow, but in medicine it is completely necessary. When a family is hoping for good news, euphemisms such as “the patient is at peace”, “not with us anymore” or “passed” often get lost in translation. In an article entitled “Doctors and the ‘D’ Word” by Dr. Danielle Orfi (author of What Patients Say, What Doctors Hear which is now on my Must Read List) explained how these euphemisms can cause confusion even amongst medical staff. It may sound cold, but some of the most clear interactions I have had between a medical team and a patient or a patient’s family is when someone said outright “Mr so-so has died” or “you have cancer”. It’s uncomfortable to be so forthright, it was even uncomfortable to type those statements. It seems so blatant, cold, uncaring, but it is completely necessary when delivering bad news.
- Give the patient and family time – studies have shown that it takes the brain longer to process bad news (If you’re into neuroscience, check out this article about how the brain filters good and bad news). Don’t rush the interaction. Give the patient time to process the information and formulate any questions they may have.
- Form a team – as a medical student I often don’t get to decide how or when I deliver news to a patient, but I have been fortunate to work with attendings who insist on “family meetings” to deliver bad news. A family meeting is a nice way of describing the process of gathering the family in a private room with the attending, a psychologist, and a palliative or hospice nurse to discuss a patient’s condition. The meeting itself is uncomfortable and people are unpredictable when reacting to bad news. Some families insist on getting the facts; they want to know all the lab values and they want to see the imaging. Other families may go into denial or be angry at the medical team. It’s helpful to have multiple people in the room to navigate this awkward interaction. In my hospital, the attending typically starts by talking about the patient’s medical course before giving a prognosis. Next the psychologist will ask the family about the patient’s wishes and the family’s expectations. Finally the hospice nurse will discuss options and services available at the hospital or within the community. Organizing a collaborative meeting takes a concerted effort with many departments, but patients and families typically respond very well to this level of care and attention.
- Follow the ABCDEs of delivering bad news (as per the American Academy of Family Practitioners):
- A – Advanced preparation – Review relevant clinical information and mentally prepare how you will deliver the news. Schedule a time to meet with the patient in a quiet location and minimize interruptions.
- B – Build a therapeutic environment – Introduce yourself and your role in patient care. Determine how much information a patient wants to have disclosed. Incorporate family members into the meeting.
- C – Communicate well – Avoid euphemisms or medical terminology and speak frankly. Ask the patient to repeat back what has been said to assess a patient’s understanding. Pause and allow the patient to have time to process the news. Repeat key information and provide any handouts or images that may aide the discussion.
- D – Deal with patient and family reactions.
- E – Encourage and validate emotions – Offer realistic hope. Form an interdisciplinary team (hospice, referrals to specialists, etc.)