I recently struggled with an interesting patient care issue related to my illness. I had to cancel several weeks of clinical sessions, which I realize is a hardship for my patients.
A few weeks ago, when seeing a long-time patient of mine—a warm woman with several chronic conditions—I apologized that we had cancelled her previously scheduled appointment on short notice. I paused a beat and quietly said that I had been hospitalized. She was genuinely concerned. She was anxious to know more information and if I was going to be okay. I waved it off and said that I was getting better. But as I attended to her needs I could not help thinking whether I should share more information with her.
There is a growing literature about physicians sharing personal information with their patients, something known as “physician self-disclosure” or “physician personal disclosure.” In one study, investigators examining audio recordings of patient visits found that when general internists self-disclose patients report lower satisfaction, but when surgeons self-disclose patients report higher satisfaction. An accompanying editorial suggested that some forms of self-disclosure may be useful while others may violate patient-provider boundaries. Another paper in which investigators observed physicians interacting with standardized patients concluded that there was no evidence of a positive effect of physician self-disclosure, that it could be disruptive, and that physicians should consider avoiding it. Physicians Danielle Ofri and Juliet Mavromatis explored their experiences with personal disclosures to patients in their recent blog posts.
I considered the pros and cons of disclosing details of my illness to my patient. On the one hand, I didn’t wish to violate boundaries or to have my patient worry about me. On the other hand I did not believe that boundaries were absolute and impermeable, and I was comfortable being seen as human and subject to the same frailties as all human beings. I even have patients with whom I’ve shared meals and some with whom I connect on social media. So I’m comfortable selectively breaching what some would consider to be inviolable boundaries. After all, if I practiced and lived in a small town it’s likely my patients would know almost as much about my life as I knew about theirs. It’s only the big city in which I practice that makes it less likely I will accidentally connect with patients in a non-clinical context.
As we often do in primary care, I asked myself what was the worse thing that could happen if I disclosed? After all, I had already made a conscious decision to disclose my condition to the world through my blog post. And I knew this patient for so many years—what was I afraid of?
Just before I left, I scrawled the link to my story on a pad of paper in the exam room and handed it to the patient. Later that night, I found that she left a nice comment.
Would I have done this for all my patients? I doubt it. Did I do the right thing? I think so. But I suspect my views on this will continue to evolve over time.
Let me know your thoughts.
Connecting 
Wow- Danny- I didn’t realize you had gone through all this but am so glad to see you are back to your good ways!
While a bit of a different animal, self-disclosure for dentists is pretty common and helpful, though I have to be careful to do it at the end of the appointment when their mouth is not stuffed with cotton roles!
Seriously, glad you are healthy and hope we can get together in Boston before long.
Sam
Thanks for your good wishes Sam (and your perspectives as a dentist). Would love to get together and catch up!
You are a physician second, a human first. Humans relate to one another through personal stories. Let’s nurture kindness, caring and support both ways in the doctor-patient relationship.
Great perspective, Joe.
Thanks.
Danny… I agree with Joe – We are human beings above all. In addition, as I’m sure you have noticed, your long term patients who you know well — also know YOU well 🙂 They will pick up on the fact that something is wrong. More so, I believe it would likely change our “relationship” if they weren’t informed to some degree about what had transpired.
Glad you’re doing well.
Howard
Thanks for the affirmation. Is that the way you practice, Howard?
Very much so Danny…
I don’t know if you’ve read Peter Ubel’s “Critical Decisions” yet – if you haven’t, I strongly recommend it. Much of it deals with the emotional component of medical decision making, both for the patient and for the doctor.
There’s a wide swath of content all over ever’where from the patient side of this conundrum, and way too little from the doctor’s perspective. I think that any doctor’s decision to share personal information with patients is entirely up to that MD. However, all of us are made up of our experiences, and the emotional impact of them, as well as the cognitive effects of learning-by-doing.
All that you’ve proven here is something that anyone who knows you already knew: you’re a deeply human doc, in the best way. It’s your self-awareness, combined with your intellect, that drives your emotional intelligence.
We need to figure out how to help clinicians stay in touch with their humanity. It’s a difficult path to navigate, because healthcare pros see so much in the way of human suffering, it requires them to built filters to keep themselves from being emotionally flayed every day of their lives …
Yes, there is something important (and therapeutic) about physicians keeping in touch with their humanity and not worrying so much about what’s the most right thing to do. Go where your humanity and heart lead you.
Thanks, Casey.
Danny, you should have a chat with Gordy Schiff who has recently written about boundaries in a somewhat different sense then physician self-disclosure. I’d love to be a fly on the wall for that conversation. (Schiff GD: Piece of My Mind: Crossing Boundaries—Violation or Obligation? JAMA September 25, 2013 Volume 310, Number 12 1233-4)
I know Gordy and that sounds like a great idea. I did not read the JAMA piece, but will download it.
Thanks.
Hi Danny,
As a patient, not only would this disclosure “humanize” (such a sterile word for such a fantastic concept) you would also demonstrate that you valued me as more than simply a patient. As I say about my therapist, more than an acquaintance but less than a friend, perhaps?
Insightful patient perspective, Scott. Thanks.
There’s not much in the way of published research on the subject of physician self disclosure.. Anecdotally, I saw my Internist a while back – he and I are the same age – and I casually mentioned that I had fallen off a ladder and broken several ribs. He laughed and said that the same thing happened to him…a fall off a ladder and broken ribs. That was one of the first time in 15 years he ever shared anything personal about himself. I appreciated it because it made him suddenly seem human and a bit more empathetic.
I would suggest that physicians worry less about engaging in harmless self disclosure and more about patient’s perception that they are cold, calculating and generally uncaring.
I’m coming to that conclusion myself, Stephen.
Judicious self-disclosure, being fully present, and active listening is part of empathic, therapeutic communication between sender and receiver in a caring health care encounter. This is what teach and practice as an NP in college health in Boston.
You and your family certainly experienced a harrowing and frightening ordeal on so many levels. Wonderful that you are well on the road to a full and successful recovery. Yay to all who are supporting you in this process and for your being a brave soul !
You still have so much to experience on this beautiful planet!
Thanks so much for your comments and good wishes, Koeniger1. With which college health service do you work? My colleague, Kay Petersen, works part of her time with college health.
I practice at the Simmons College Health Center with Kay, part time too, so, we have the same colleague just across Brookline Ave. 🙂
I also teach full time in the Master’s and Doctoral programs at the Simmons College School of Nursing and Health Sciences.
People always feel physicians are some sorta hero and can never fall ill or let alone have any medical related issues or even share our personal medical problems with anyone else…Well, I guess we ma be heros in our profession! Physician personal disclosure is inappropriate profession-wise,,,,but nevertheless we are human as well and would most definately feel like sharing personal thoughts, healthwise or not…So my dear, you did well talking about it and from all indication, it made u feel better I guess.
Agbo, I didn’t disclose this to my patient to make me feel better. I did it because she wanted to know and I felt it was okay to let her see me as human and subject to illness just like all people.
Are you saying that from the perspective of a healthcare provider or as a patient?
I’m really curious what made this seem to be for *his* benefit, and what in the post leads you to say “it made u feel better I guess”!
Is there literature (or even widespread rumors) about clinicians talking about their own illness that suggests it’s unethical or unwise?
Facebook makes me yearn for a Like button on comments. The Disqus comment system has that, but I hate it for other reasons. (It gave me much heartburn conflicting with other logins.)
> On the one hand, I didn’t wish to violate boundaries
> or to have my patient worry about me. On the other hand
> I did not believe that boundaries were absolute and impermeable …
It’s becoming apparent that your “essays” on this site give valuable insight into your thought processes, your considerations. (For that reason, I call them essays, not just blog posts.) It’s not limited to these posts related to your illness – you guide the reader through how you face issues and decisions. It builds empathy and understanding.
In your words here I see a powerful argument for sustained relationships between a patient and a provider – that powerful connection. I’m sure you wouldn’t have been as personal with a stranger; the judgment call you made in that moment was based on your years of relatedness, I expect, and what you know about how she takes things and what concerns weigh on her.
This is a heck of a good discussion here.
I suffer with nerve pain as a result of repeat surgeries. My pain was treated by clinicians who had no idea what or how I was actually feeling. People get cuts and bruises, but not many have nerve damage. I always sensed that my pain was not taken totally seriously…it could not be THAT bad. Then on one of my visits to my PC physician, it was revealed to me that they had suffered an injury that caused constant nerve pain. They said to me, “All I could think of was you”. I have never had such a connection with a clinician. It was a defining moment in how I handled my comdition moving forward. It was so empowering to know I was taken seriously and with empathy. A moment that formed my views as an empowered patient. Someone, my physician, knows what I am going through… really knows. This is the relationship I wish for every patient.
Thanks for the comment, Pam. It sounds like that was a turning point for you and suggests another way that physician self-disclosure of illness can be helpful.
But I think you’d agree that good physicians can show empathy even without having experienced the patient’s condition.
Personally I’m moved by every story I hear of an awakening like this. Thanks, Pam.
As a physical therapist working with cancer patients, some who have poor outcomes, I’ve been asked what training I’ve had in dealing with loss. The answer is “No formal training”. I decided about 15 years ago to connect with my patients on a personal level, and to be sure that I’m not the only one “giving” in the relationship. That way I look at a new patient and wonder what I’m going to learn from that person in my human experience. And that approach seems to be working for me!
Thank you for sharing your story, Danny. I couldn’t stop once I started reading. So glad you’re back in the game!
Amy deB Kinder (Dave’s sister….) in Annapolis
Amy, patient care benefits from that human connection. Just because the role of the clinician is to treat and that of the patient to be treated, doesn’t mean they can’t both learn from each other and both grow from the relationship.
Thanks for your contribution, Amy.
Totally great discussion. Thanks for presenting it Danny – and such thoughtful comments. Knowing the studies, and being a primary care doc, I have to say: it depends. This is the Art of Medicine. Like many things about ‘the art’ – it’s difficult to measure, to test, to replicate.
The studies with internists and surgeons – were done to look at associations between physician communication styles and malpractice. Funny thing – there was an association for internists, not surgeons (Do people have lower expectations about surgeons’ bedside manner? But I digress…).
Some disclosure statements (in the studies) seem odd, and perhaps done for the wrong reasons. To convince a patient to do something, because the doc did? To give examples? In that case, self-disclosure shouldn’t be done. I think it should be uncommon but is appropriate in particular circumstances. Long-term partnerships, when patients are curious. If patients ask me, I answer, but keep it real brief. It’s their time, not mine. It can be distracting, may make a patient uncomfortable. But again, it’s an art. In the case of an absence (like Danny’s), the patient is already wondering what’s going on – before the doc gets in the room. So looking for cues, offering a prompt…paying attention..I think that’s the key.
Mostly, genuine empathy is best – like Danielle Ofri’s blog about a patient answering the call from her kid’s teacher during their visit; Danielle thought about disclosure but chose ‘I know’ instead.
Sharing with patients isn’t only about one’s experience; it can be about sharing beliefs. I will always remember a Veteran patient (now passed) who wouldn’t let me out of the room until we talked politics. Now this is never, ever, a good idea (and I get emails about how it’s against federal employer policy). But I made one exception, in my whole career. Because we’d both end up laughing – belly laughing. And have plenty of time to talk about blood pressure, blood sugars, diet, exercise, sleep and other activities of daily living. And he said he liked seeing me and the rest of the team. When he died, I cried. A lot.
It really is about Connecting. Hey, what a great name for a blog 🙂
Thoughtful comments, Sue. Thanks.
As a patient advocate who constantly finds herself reminding people that our doctors are human beings first and doctors second… Thank you for self-disclosing. You included your patient in the circle of who you are as a person. I think that is something we’ve lost over the last 100 years when our doctors were our friends first, and someone who took care of us in a health care partnership, second.
Ellen, that historical perspective is interesting. On the other hand, a century ago your doctor didn’t have much to offer you in the way of effective treatments.
Thanks for your comment.
Dr Danny,
I think we all appreciate the leaps that health care has made, not only in diagnosis, but treatment options for patients. 100 years ago I would have died, which for me would certainly be bad :). I wasn’t suggesting going back in time. But I do wonder – is there a reason why our doctors can’t open themselves to their patients and still be effective in the health care team the two should create to maximize care? I think the idea of distancing the physician from the patient results in a lesser experience in every way for the patient, and many would argue, the doctor as well.
When I placed your post on my Facebook page, I received some interesting interactions with patients including:
“My Doctor did this for the first time just yesterday! He explained that once he had the same condition and was scared at first, how he dealt with it, knew what not to do and did it anyway. I felt blessed that he chose to share personal health information with me and made me feel a lot more confident in his skills and humanity.”
” Dear Dr., I believe that when a Doctor shares things with patients it is always a positive experience. I have had one or two Doctors like this over the years, they were my favorites, these men shared serious and child rearing stories with me. It was flattering to me that they liked me enough on a personal level to share a part of their lives. They are both retired now, I miss them both, the sharing kind of put us on an even field, it was generous of them and made for a wonderful Dr./ patient experience.”
” Absolutely wonderful…. He is human… Doesn’t everyone want a physician who is precise…speaks to you in a way you could understand him…and you could feel comfortable telling him with is wrong with you…I don’t know one person who wants to have a doctor that treats you like a piece of furniture…who knows, a doctor might need your advice someday….God bless all our physcians, nurses, surgeons, advocates… Etc…”
” A couple of mine have and I really appreciate their being open with me. We work as a team to solve my health issues and their disclosure makes me feel as if they are vested in improving my health.”
I’ve never met a patient yet who prefers a doctor who doesn’t share, over one who does.
Great comments, Amy. I personally have concluded, partially through this experience and the discussion on my blog, that I should be able to share this kind of personal information. But I do think it depends on the patient and the situation. A few readers stated that they would never want that kind of disclosure fro their physicians, and I have had some patients to whom I would never feel comfortable disclosing certain aspects of my personal life, illness or otherwise.
One more point: self-disclosure is not necessary to be an empathetic provider.
Something about this whole discussion was just weird to me, and I realized what it is: the word “disclose,” particularly “self-disclose.” To me it connotes revealing something that you were keeping secret. I wonder how the word got into this topic – it must have been long ago.
My sister Amy’s comment above seems to be about … about … what do they call this blog? Connecting?
If that’s the word, it would explain why there’s no single answer to whether or how to do it – because connecting to each different person is different, no?
I think it became known as disclosure because these are things that we usually keep private, even from acquaintances who aren’t close friends.
And I agree with you about different approaches to different types of patients/people.
Self disclose is a term used in the literature and research to refer to the exchange of personal details by both the patient and physician. No moral connotations should be connected to the use of the term.
If truth be told patients are often just as relectant as physicians to engage in “self disclosure” ,, i.e., telling doc about seeing s chiropractor, stopping medications, etc.
Interesting observation, Steve … it seems to me that when patients withhold something (as you suggested) it’s because they fear disapproval. (I appreciate everyone’s thoughts on “disclose” here btw.) Another cause is embarrassment – “I don’t want to show this lesion on my privates,” etc.
Is “withhold” the opposite of “disclose,” in this context? In any case it all seems to come down to being socially appropriate or not, eh? Hence the “not black and white.”
e-Patient Dave,
I understand why the word *disclose* however certainly prefer the thought of connecting, and agree with your assessment. In my very humble opinion, I feel like this will eventually become more the norm, however feel sad that we find the need to analyze how to have a human relationship between human beings. I guess that’s the part that seems a bit strange to me.
I am a medical social worker. Boundaries are a chronic consideration with patients in this role. Each patient situation is different. I have a chronic potentially life threatening condition and work with people with chronic potentially life threatening conditions. I have disclosed to some patients who appear to have a fear I will not understand some of their uncomfortable feelings. There must be a clear benefit to the patient. Some patients will feel you can better understand but some will be afraid you can’t meet their needs if you have limits. My condition has made me a better social worker. I was empathetic before but had some difficulty being present – there was always a time crunch. Now , I lose track of time because I am present. More quality vs quantity.
Susan, thanks for your comment and insights. It really brings a new dimension to the discussion, an extension of the issue that has already been raised about parents only wanting their kids to see pediatricians who have kids of their own. I agree with you about the empathy issue.
I wish you strength in coping with and battling your illness.
Great contribution to the discussion, Susan. I particularly like “There must be a clear benefit to the patient.” That may not always be clearly possible, but I like it as the *intention* of any disclosure.
How have you dealt with the time crunch? Do you just disregard it, and bust the schedule sometimes? Or do you find it actually doesn’t bust the schedule?
Danny, I’m a patient advocate who’s rubbed virtual elbows a fair amount, and literal elbows briefly, with your patient Dave. FWIW I’d find the kind of sharing you write about highly valuable in a patient-doctor relationship. Assuming that the baseline two-person gestalt led to an inclination to share in the first place, I’d welcome the connection. I’m the kind of guy who’d chew up your apt. time with a batch of questions probing along the lines of how your experiences affected your assessment of all things medical and your practice of medicine going forward. I think we need more transparency, not less. As a lay person who’s become active in end of life reform, my antennae are always up about this issue. For me, trust is enhanced with “disclosure” and diminished with opacity.
Bart, it is interesting how many feel that the “human” connection outweighs everything else, and others felt that we must be cognizant of rules that force us to distance ourselves. But I agree we need more of the human touch in medicine.
I have had a great deal of interaction with doctors for the past 18 years, due to a number of conditions, including cancer, severe bronchial asthma, and a finger loss due to catching my ring on something, which pulled a tendon out of my arm and caused permanent damage.
The cancer caused me to become very involved in the e-health movement, with ACOR and other organizations, although more recent events have made me re-focus my attention on my other health issues.
Seeing doctors for these conditions… I had a doctor tell me the bronchitis was all in my head and I should just buck up and go back to work – I changed doctors and was out of work for weeks, unable to breathe, totally fatigued. I had a hand surgeon tell me I was a Vicodin addict because I needed medication for pain 2 weeks after the traumatic finger amputation. The difference between that doctor and the one I immediately replaced him with, who asked how my pain levels were… night and day.
I applaud your decision to disclose what happened to you – when appropriate. It makes you human. If I were your patient, it would make you more personal, more accessible. I have experienced both kinds of physician, from internist to specialist. It makes all the difference in the world, to me, when the physician reveals him or her self as human.
I do think you have to assess what the individual patient wants to know, to some degree. And – considering what you’ve been through, take it easy! Life is short, Maybe having had this awful, terrifying, traumatic experience will add to your appreciation of each day. I know it has for me. Congratulations on posting all this, and on your recovery.
Deborah, sounds like you’ve been through a great deal and are continuing to have to deal with it. Thank you for your comment and good wishes.
> I do think you have to assess what the
> individual patient wants to know, to some degree.
And ain’t that true of any healthy relationship! I don’t know if there are formal measures for a good health relationship, but I imagine it doesn’t include flat-out not believing the other party when there’s no evidence for disbelief.
I keep returning to something I heard 2 years ago from Richard Rockefeller MD, one of “Doc Tom” Ferguson’s friends: “If you have a collegial relationship, you can talk about it.” The “collegial” bit made such an impact I wrote about it last year, in both business and medical contexts.
On a related note, Deborah – during my near-fatal illness in 2007, the nurse who was managing my case pointed out that some patients have more appetite for information than others. She’d learned to assess that silently while working in pediatric oncology.
People vary significantly in their interest in having information. Those of us who participate in this kind of discussion tend to be “information-seeking” patients – but some still want the “doctor knows all and don’t ask questions” style.
Something that no one has mentioned (I think) is the possibility of loss of employment following disclosure of illness. Oh, it’s illegal, etc., but it happens. I am now retired and I find the freedom to never consider that aspect very liberating.
One other thing related to disclosure of illness on a public blog (not specifically related to disclosure to patients) is the concern that in the US this could make it difficult for the discloser to obtain health insurance. But thank goodness the ACA has made this irrelevant, which similarly is quite liberating.