Saturday, August 6, 2011

If You Can't Say Something Nice

"What does this mean?"

I was sitting across from one of my Dad's oncologists, clutching photocopies of all of my Dad's recent imaging studies and his surgical pathology report, looking for answers.  When my Mom and Dad had met with her a day earlier to review the results, the oncologist had waxed poetic about a similar patient who was still playing golf five years after his diagnosis, but I wasn't buying it.  Although I was only a third-year medical student at the time, I knew that phrases like "14 out of 29 lymph nodes positive" and "extracapsular spread" and "suspicious for diffuse bony metastases" were not used to describe someone who would be playing golf in five years time.

"Pardon?" she asked, pretending not to understand my question in the hope that it would go away.

"What is his prognosis?" My directness made the oncologist squirm in her seat and start scribbling furiously on a chart so that she wouldn't have to look me in the eye.

"Oh, well, it's always so hard to tell.  Why, I know a person just like your Dad who's still playing..."

"I understand that.  What I want to know is, on average, what is the life expectancy of someone whose melanoma is as advanced as my Dad's?"

"Oh, well."  She was really flustered now, staring intently at her silent pager as if she could make it go off through shear will.  "It's really hard to say.  Everyone is different."

"Fine."  I realized I was getting nowhere.  "What stage is his disease?"

"Stage IIIC" she replied, seemingly more comfortable with the scientific terminology than with an honest explanation of what the scientific terminology meant.

Alone at my computer that night, I went to my trusted Harrison's Principles of Internal Medicine and translated the information into a 5-year survival rate of 24 to 29%.  But it still wasn't what I was looking for.  What I wanted to know, needed to know, was whether I should cancel the out-of-province electives that I had scheduled for the fall so that I wouldn't miss my father's death.  What the chances were that my father would die while I was traveling across the country to interview for residency positions.  Whether I was being foolish for thinking that my father might somehow survive to my medical school graduation in the spring.  I needed someone with experience to put aside his or her discomfort and admit to me and my family that my dad probably had months, maybe only weeks.  Without that information, I couldn't even begin to know how to navigate the horrible journey that lay ahead.

Unfortunately, despite the growing awareness of the personal side of medicine and the importance of effective communication, we as doctors are collectively awful at delivering bad news.  Sitting with the oncologist that day was certainly not the last time I've witnessed a doctor be unable to admit that a patient is dying, or look at the floor while talking euphemistically about "passing away", or agree to help a patient with clearly incurable disease "fight this thing".  And every time it happens it fills me with such sadness that the people that patients trust aren't able to be honest with them.

I know that it's hard.  I've been the person delivering the bad news many times now, and I know how horrible it is, how painful the conversation.  I know very well the temptation to paint a rosy picture even when it is abundantly clear that the outcome isn't going to be good.  But I also know what it's like to be on the other end and how important it is to know the truth.  So when I have to deliver bad news, I fight the temptation to sugar coat it, look my patients in the eye, and tell them with as much compassion and kindness as I can what their diagnosis means.  Just like every doctor should.

A disclaimer of sorts:  Because I'm blogging only semi-anonymously and anticipate that I may someday be identified by someone reading my blog, please note that any stories that I tell about patients or healthcare professionals are either composites or have identifying information removed to protect people's privacy.  If my one of my Dad's oncologists were to ever find this blog, I hope that he or she will know that my family greatly appreciated what they did for my Dad and will recognize that this post is not in any way meant to be disrespectful or hurtful.  It is simply meant to be an illustration, derived from personal experience, of the difficulty that doctors often have communicating with patients.


NP Odyssey said...

As a doctor it must be hard to put a time frame on someones life related to a diagnosis. As living beings and being so different you see those who take on the disease and fight, those who decide it is inevitable and everything in between. I would hate to have to say to someone, on average you will live this much longer.

K8 said...

Wow, what a fantastic post this was. I'm going to add you to my Google reader now. Even if you pepper us with cat photos fairly often. =)

The Daze of Whine and Roses said...

I am so impressed with you. You are exactly the kind of doctor I wish all of our doctors are. Someone I would be honored to work with
My son was diagnosed with ALL 18 years ago. His oncologist was very good at what he did but, unfortunately, did not recognize when I was completely over-whelmed when my son was in crisis until I stole a line from 'Philadelphia', looked him square in the eye and asked him to 'Explain this to me like I'm a 4 yr old'.
I think you are going to be a wonderful doctor

Just an Intern said...

Hey lady,
I understand what you mean. My mom died of pancreatic cancer my second year of medical school, so I know what it feels like to have to be the one giving the DOCTORS the full court press just to get some answers. I felt so angry and so frustrated with the situation as it was. Great post. I miss my mom everyday and I'm sure you miss your dad, too.
The Intern

dolce vita said...

This is such a fantastic post. Even though I'm not in med school, I had a similar experience recently with friends, but I was on the 'other side'.
long story short: mutual friend, beautiful, non-smoker, keeps herself healthy, professional ballroom dancer has been diagnosed with small cell carcinoma, with less than a year My friends and I found out about it together when we were on vacation. My friend M. and I are both applying to med school now and both have taken enough pathobio classes to know exactly what that diagnosis meant.

Our other friends are in law and engr, so they asked me, honestly, what the prognosis is.
"But they can cure her, right?"
Me: "it's just...that kind of cancer is very aggressive and if it's already Stage IV, that means that.."
M: "it's not good, the thing is...*biology biology biology*
Me: *science, relaxes a bit when we start talking about markers and tumor progression*
Friends: "But what does that mean?"
Me/M: *gaping fish*
We finally got brave enough just to say what we needed to say, but still, I hope we get better at it. Our friends were more upset when we were circumlocuting rather than when we told them straight up: "She has less than a year".

At least, I want this, and your story as a reminder that I *must* get better at this.

bloggingmyproclivities said...

I hear ya! Good for you for taking that stand. yes, we want to know. Yes, even the bad news. "It could be years" doesn't cut it. My late husband used to joke that he could have his head cut off and be in his ahem, and the oncologist would still be pushing, "Just one more round of chemo. . . " Hope all the medical profession heeds your words.
By contrast our GP was always upfront and direct; he's the one who was there for us when we needed him. OK, tears now, so I'm going.

Geno said...

My wife had lung cancer, mets to the brain and I was told it was not uncommon to survive several years. She lasted four months after whole brain radiation. I would have done things differently if I knew she needed me for four months instead of 24 months. My hope is for honesty with my doctor. I know I am going to die. If your knowledge allows me to better prepare I would appreciate your truthfulness. Thank you for what you do. You do make it easier to live or die.

Amy said...

Followed you over from Anonymous Doc. I am so sorry about your father's illness. Perhaps there is a great need in medicine for someone (social worker? chaplain?) to act as an intermediary between the doctor and the patient/family in situations such as these, to facilitate communication.

I'm sure your experiences will go on to influence your practice - for the better.

I hope he makes it well past your graduation.

emmy said...

Sorry that this comment is so late. I'm new to your blog and I know that by now your father has passed away. I wish that this post and the comments that have been left could become a mandatory part of any medical book dealing with the subject of how to deliver bad news. Patients and their families need to be told the information that will make a difference in the decisions they make. My oncologists, while they are compassionate and kind and have never lied to me, will neglect to tell me the any information that my sway me to make a decision in any other way than the way they want me to decide. While I accept that they know infinitely more than I do and the decision they want me to make is likely the correct one,it still takes the choice for other options away from me.

As far as your father's doctors and your patients reading your blog and recognizing themselves. It does happen. About 5 years ago I walked into my oncologist's office and saw a blog post I had written on their bulletin board. With a hand written note stating "If this ever happens to you here please contact the office manager immediately." It was a very uncomfortable situation to have to let them know that I had penned the flamer.

Michelle said...

This comment is late in coming too. I came to your blog via The Long Road to Medical School (thanks!).
My Mom was recently diagnosed with stage iv endometrial cancer and we are struggling to get some straight answers from her oncologist. She's started chemo, but nobody wants to talk prognosis or quality of life, even though they've already contacted hospice. My Dad is having a very hard time with accepting what is going on and it's as if the oncologist is making it easier for him to deny the realities...meanwhile precious time is ticking away.
I really appreciated your post - I'm not an MD (a biochem PhD, actually) and it was somewhat reassuring although irritating to know that our experience is not uncommon. I'm sorry about your father...I'm quickly learning how hard this is.

Sisterhood of the Sensible Moms said...

You are the best kind of doctor. I'm sorry for your experience with your father's physician.

Stopping by from the Medical Monday BlogHop. Ellen