A very close friend of mine has breast cancer. It is a very small tumor, diagnosed on an annual mammogram, requiring confirmation with a breast MRI. She had a lumpectomy today, and I was with her at the hospital. This proved to be an enlightening experience.
To put things in perspective, when I was in training and in practice (yes, in the dark ages when we were expected to stay awake AND care for patients for over 48 hours at a time every 3 days), we had not heard of patient-centered medicine. I learned that my role was to diagnose, come up with a plan of action and convince the patient at any cost that my plan was the correct one. To be sure, I always tried to do this in a nice way, but would get a bit impatient when my judgment was questioned. This is the behavior modeled for me by my elders and others whom I respected.
Well, that was then. Having had quite a few years to reflect on the practice of medicine in the context of our healthcare system, I have learned just how misguided this attitude is. And, being a Sagittarius, I cannot fathom how this universal truth is escaping others. Yet escaping it is. This became obvious to me today.
My friend had to have a nuclear medicine test prior to her lumpectomy to define the extent of axillary nodal involvement. She had been told that this is an arduous and painful experience that cannot be mitigated with pre-medication. She was also informed that asking the radiologist to deliver the radionuclide slowly rather than as a rapid push might reduce the sensation. So, my friend, who is herself a physician, was prepared for a civilized and simple conversation with the practitioner. Yet, this is not what transpired. You would think that being asked to deliver the chemical slowly is not such a big and unreasonable request. Well, if you thought this, you were wrong: evidently this was such a big ego blow to the radiologist that she felt compelled to respond snidely, "Well, OK, I am not going to fight with you about it". Now, this is off-putting under the best of circumstances. Imagine being about to go to the OR to have a cancer removed from your breast, and having this snide come-back thrown at you. And why? What is the harm in going along with the patient's request if it makes no difference in the end-result of the test? Is it really necessary to diminish her in such a blatant way?
Well, this physician was of a similar vintage to me, and I can only imagine that she came into practice before patient-centered care became the standard. In her mind, as in mine in those distant days, my involvement with the patient's care was not really about the patient necessarily, unless they fell in line with my recommendation. The shameful fact is that my ego was much too fragile to allow a discussion or questions about my considered course of action. How could they go against my years of training, deep knowledge and their best interests? I cannot say for sure, but it is likely that my friend's radiologist was cut from similar cloth. And what is so obvious to me today has not yet been assimilated by so many of my colleagues, including this person.
As I have said before, the new direction for medicine cannot be what I am used to in real estate: "I do not have what you need, but I will show what I do have". The new direction in medicine must undoubtedly be one where the patient is the center of the encounter, and it is the patient's interest rather than the doctor's ego that must be protected assiduously.
Lest you think that the entire hospital experience was negative, let me be clear: of all the people taking care of my friend, the radiologist was the sole disappointing exception. Her surgeons, anesthesiologists, nurses and ancillary personnel went above and beyond my expectations. I was amazed by the level of civility, good humor, politeness and real involvement everyone exhibited -- it was truly different from my days on the wards and pleasantly eye-opening. It even gave me some hope for the future of medicine in the midst of my normally nihilistic ruminations.
The great poet Rumi said that changing language can change our life. Well, when the recovery room nurse said to my friend "Let me know when you feel that you would rather rest at home than here", I was overcome with warmth and good will. The language of medicine does seem to be changing. And if it continues in this vein, perhaps it will change our lives.
Clap clap clap clap. This shall be tweeted.
ReplyDeleteOn a related note, here's a tweet from the Salzburg Seminar on informed decision making last week: "Dartmouth's Richard Wexler notes docs commonly value themselves based on what they know, so NOT knowing is a social obstacle."
Methinks it will take some doing to change this culture - to overrule how y'all were trained. I love that we're getting to work on it.
Great post and thanks for sharing the story about your friend. I hope all is ok w/ her.
ReplyDeleteThe state of healthcare does need an overhaul, a true change in thinking and you seem like you can be a change agent in that regard. As a user experience professional going through some trying times as a patient, I am truly frustrated by the out and out lack of empathy.
Like you said, it's not all, but the ones you encounter sure can sour the experience. If only the healthcare provider could imagine being in the patient's shoes - treat others as you want to be treated. It's really as simple as that.
I'll be following your posts and appreciate all your efforts to make a difference.
Simply, beautifully clear.
ReplyDeleteFor some of us who view the interactions between a patient and health professionals as only one aspect of medical care, the kind of doctor attitude you witnessed is just unacceptable and should no longer be tolerated.
When a great "expert"behaved in this way with my wife 22 years ago, she instantly told him "doctor, this room is too small for the 2 of us. EIther you get out of the door or I jump out of the window". We never saw him again.
Even the normal medical language can be scary for people who are on the receiving end. I just got a communication from a patient who had a neurological appointment for tremor. She was told she had "essential tremor". The neurologist is a good clinician, but his words were very frightening to my patient. I told her that essential tremor meant two things: first, we knew essentially nothing about it, and second it did essentially no damage. She stated this helped a lot since she was attributing far worse connotations to the word "essential.
ReplyDeleteWe need to be careful about how a diagnostic label is received emotionally by a patient who is scared about what is happening to them.
Great post Marya!Yes, little words can do great harm or take you to heaven. I still remember the nurse at the Royal Victoria Hospital/Montreal/Quebec who at exit came to me and told me that she will carry the baby and deliver it to me as a landmark of the new life, my baby and I were to start after leaving the maternity hospital.
ReplyDeleteIt's great time for doctors and nurses to start to think and act like human beings and not as medical robots. We do need answers based on EBM but told with empathy by a human being.