Tag Archives: chronic disease

Death By A Thousand Cuts – Physicians’ Surprising Response To My Wife’s Lung Cancer Recurrence

This is a true story….

My wife was about to celebrate her 10th anniversary as a Stage IV Non-Small Cell Lung Cancer survivor (a pretty remarkable feat) when it happened.

It started out as a cough.  We had just returned from a family trip and assumed she had picked up a “bug” from one of the boys. It also “lite up” on her semiannual PET/CT scan down at MD Anderson as small dark masses where there weren’t supposed to be any. We all hoped the cough and the PET/Ct results was the result of a cold or allergy….it had happened before. Her medical oncologist, one of the top thoracic oncologists in the world, doubted a recurrence after 10 years.  But if it was a recurrence, he told us he would put my wife back on Tarceva, the oral chemo that had worked so well for her before.

But we were all wrong. Her lung cancer was back and appeared to have spread.  The cough escalated into a 24/7 serious hack-a-thon.  She couldn’t finish a sentence without coughing.  We avoided being around other people as the coughing got worse. My wife didn’t want “bother” people.  Nor did we want our family and friends to get the wrong impression….that my wife was dying. She had beaten the odds once and she would do it again we told ourselves.  Turns out we were the only ones that believed it.

Within the space of 2 months, my wife saw a local pulmonologist (we live in Northern California not Houston, Texas where MD Anderson is) to rule out any other causes for the cough.  She also kept two long-scheduled appointments with an endocrinologist and a cardiologist for issues unrelated to the cough or cancer.

That’s When I Noticed It – Every Physician My Wife Saw Acted As If She Would Be Dead Soon

To be sure none of my wife’s physicians ever said she was dying. But knowing something about the nuances of how physicians “communicate” with patients I could tell that’s what they were thinking.  After attending every one of her doctor’s appointments over the last 10 years you recognize the tell tale signs.   Neither the endocrinologist or cardiologist were familiar with my wife or her condition as these were our first visit to both.  But they clearly could not get past her coughing.  They politely cut short the initial appointment and told my wife to contact them after the lung cancer had been dealt with.  You have bigger problems than a thyroid nodule or a rapid heartbeat they told us.

Mind you my wife was concerned enough (let’s say she was engaged) about her thyroid nodule and heart health that she 1) made the appointment to be seen and 2) actually kept the appointment because she/we believed that she would be around long enough to have to deal with these problems sometime.

The pulmonologist, after ruling out allergies or infectious disease as the cause of my wife’s cough, threw up his hands in apparent defeat and said “your cancer’s back and there’s nothing more I can do for you. “ He referred us to a local a local thoracic surgeon in order to get her cancer re-biopsied before starting chemo.

The thoracic surgeon, like the other doctors, couldn’t deal with my wife’s coughing and shortness of breath which was pretty bad by now.  Rather than come up with a definitive plan of action regarding the biopsy, the surgeon hemmed and hawed about the different approaches to doing the lung biopsy – one more invasive than the other.  The surgeon gave me the distinct impression that the biopsy in the long run wouldn’t matter given the apparent seriousness of my wife’s condition.  He promised to discuss the biopsy options with my wife’s oncologist the next day and call us with the “game plan.”  The doctor never called us back.

By this time it was 5:00 pm on a Friday afternoon.  We felt we had already wasted too much time between the pulmonologist and the thoracic surgeon and my wife started her oral chemo at 5:01 pm.  We immediately felt better because at least we were finally doing something positive to address my wife’s problem.  Anything is preferable to watching sympathetic physicians, nurses, office staff, radiology techs, etc.  shake their heads saying to themselves “poor woman” doesn’t have long to live.

Post Script

Within 10 days of starting her oral chemo, my wife’s cough and shortness of breath completely disappeared.  After 2 months of being on Tarceva the first follow up the first PET/CT scan revealed what the radiologists called a significant response to the treatment.

Not bad for someone whom so many clinicians had written off!

The Take Away

Physicians need to be aware of the fact that they both bring pre-existing attitudes and biases to the office visit…and check them at the door.  These attitudes and beliefs color the decisions clinicians make.  The extent to which clinicians inform patients of all their diagnosis and treatment options, engage patients in shared decision making, or decisions as to how aggressively treat the patient’s condition are all influenced by physician’s beliefs and attitudes.

Lung cancer that presents as a bad cough is like a red flag to a bull. It invokes a whole set of assumptions about 1) how the person got the disease (you must have been a smoker) and 2) the person’s odds of survival – slim to none.

You have to wonder how many people’s lives are cut short or whose care is not what it should be simply because their doctor jumped to the wrong conclusions.

That’s what I think. What’s your opinion?

Ten Reasons Why Hospitals, Health Plans And Medical Groups Should Invest In Developing Their Physicians’ Patient-Centered Communication Skills

“Patients are, in fact, overly patient; they put up with unnecessary discomforts and grant their doctors the benefit of every doubt, until deficiencies in care are too manifest to be overlooked.  Generally speaking, one can assume that the quality of care is, actually, worse than surveys of patient satisfaction would seem to show.  Patients need to be taught to be less patient, more critical, more assertive.”

Avedis Donabedian, MD.   Father of Health Care Quality

Black Woman and DoctorIt’s no secret that poor communication tops the list of patient complaints about their physicians.  Who hasn’t heard a physician or an enabling administrator say that they “don’t have time to talk to patients” or that they “don’t get paid for talking to patients.”  While understandable, that kind of a response seems to demean the interpersonal exchange which is the very essence of the physician-patient relationship.

Contrary to what most people think, the quality of a physician’s patient communication skills impacts far more than the patient experience.   The quality of your physicians’ patient communication skills drives the quality of the patient’s diagnosis, treatment, outcome and cost.   And that my friends should get your attention.

If 30+ years of evidence is to be believed, there is a practicable solution to today’s physician-patient communication funk everyone finds themselves in.   It’s called patient-centered communications

Here are 10 evidence-based reasons why providers and payers should go beyond useless global measures of patient communication and give serious thought to assessing and improving their physicians’ patient-centered communication skills.

  1.  Improve visit productivity – collaborative setting of a visit agenda and negotiation of visit expectations by patient and physician have been show as a way to reduce the “oh by the way” comments at the end of the visit and to allow more to be accomplished often in less time.  1
  2. Improve the patient experience – the duration of the visit is not nearly as important to patients as the quality of time spent face-to-face with the physician.  Visits in which the physician invites patient participation and makes the patient feel heard and understood produce higher satisfaction and experience scores. 1
  3. Increase patient engagement – patients come to physicians for a reason(s).  They are already engaged otherwise they wouldn’t be there.  Patient-centered physicians solicit the patient’s reasons for the visit, their ideas about what’s wrong and their thoughts regarding what they want the physician to do.   It helps eliminate guessing and unfulfilled patient expectations.
  4. Improve patient adherence –  “Patient beliefs about medication were more powerful predictors of adherence than their clinical and socio-demographic factors, accounting for 19% of the explained variance in adherence. ”  By understanding where the patient is coming from physicians can avoid wasting time recommending treatments which patients will not adhere to, i.e., prescribing a new Rx when patient would prefer life style modifications. 2
  5. Fewer requests for expensive tests – strong physician-patient relationships characterized by effective patient-centered communication skills report higher levels of patient trust in the doctor and lower levels of patient requests for expensive diagnostic tests commonly found in physician-patient relationships reporting lower levels of patient trust in physician. 3
  6. Fewer ER visits and hospital readmissions – patients in strong patient-centered physician relationships are more likely to engage in the kinds of self care management behaviors which preclude ER visits and rehospitalizations.  3
  7. Better patient outcomes – Chronic disease patients of physicians with strong patient-centered communication skills are consistently found in studies to report better A1C scores, better controlled hypertension and asthma, and so on. 4
  8. Reduce malpractice risk – The majority of malpractice claims involve some form of communication breakdown between physician and patient.   Patient-centered physician-patient relationships are characterized by a high degree of relevant and timely information exchange which greatly reduces the risk of physician-patient communication errors. 5
  9. Reduce disparities in care – The evidence shows that physicians tend to be more paternalistic and directive when talking with ethnic patients, including sharing less information, compared to when communicating with white patients. 6
  10. Increased reimbursement – CMS and many commercial payers now offer incentive payments for outcomes linked to patient-centered communications. i.e., patient experience, reduced ER visits and hospital readmissions, use of generic vs. brand drugs, lower levels of expensive diagnostic tests, etc.

Note:  Later this Summer, Mind the Gap will be organizing a communication challenge called Adopt One! TM.   The goal of the event will be to challenge physicians and their care teams to adopt one new patient-centered communication skill within the next 12 months.

As part of the Adopt One! Challenge physicians and their care teams will have the opportunity to sign up for a free evaluation of their patient-centered communication skills, have their skills benchmarked against best practices and  receive a report detailing their findings and recommended steps for improvement. 


1        Dugdale, D. C., Epstein, R., & Pantilat, S. Z.  Time and the patient-physician relationship. Journal of General Internal Medicine, 14 Suppl 1, S34-40.  1999.

2       Horne, R., & Weinman, J.  Patients’ beliefs about prescribed medicines and their role in adherence to treatment in chronic physical illness.  Journal of Psychosomatic Research, Vol. 47, No. 6, pp. 555–567, 1999.

3        Thom, D. H., Hall, M. a., & Pawlson, L. G. (2004). Measuring Patients’ Trust In Physicians When Assessing Quality Of Care. Health Affairs, 23(4), 124-132.

4       Stewart, M. . et al. (2000). The Impact of Patient-Centered Care on Outcomes. Journal of Family Practice, 49(No. 9), 1-9.

5        Levinson, W., Roter, D. L., Mullooly, J. P., Dull, V. T., & Frankel, R. M. (1997). Physician-patient communication. The relationship with malpractice claims among primary care physicians and surgeons. JAMA : the Journal of the American Medical Association, 277(7), 553-9.

6       Johnson, R. L., Roter, D., Powe, N. R., & Cooper, L. a. (2004). Patient race/ethnicity and quality of patient-physician communication during medical visits. American journal of public health, 94(12), 2084-90.

How To Speak So Your Doctor Will Listen

This guest  post was written by Vicki Whiting, Ph.D., MBA is a Professor of Management at Westminster College, and an Award-Winning Author of the health care advocacy book, “In Pain We Trust.”

Doctors interrupt patients 18 seconds into an office visit, on average. Given this fact, patients who seek to maximize their healthcare must learn how to speak so that doctors will listen. There are three communication skills that, when applied to a doctor’s visit, can increase odds that your physician will hear, and help solve the problem.

1st – Prepare what you will say. 

2nd – Know what you would like to achieve.

3rd – Formulate collaborative questions.

1) Prepare:The first step in effective communication is to prepare your message. Successful preparation for a doctor visit requires identification your primary health concern, symptoms relevant to this concern, and the length / frequency / intensity of each symptom. Stick to the facts, keep focused on what you believe to be relevant data, and keep your explanation short.

CSC_0359A friend called this morning. Her daughter has suffered from abdominal pain for four months and has begun to vomit after each meal. As my friend prepared for an appointment with a new specialist, she called to ask my advice.I got an earful of physical details, ailments, concerns about her daughter’s future, and conjectures about an injury five months ago that might be related to her daughter’s problems.

After two minutes I stopped my friend. I reminded her that her doctor would likely stop listening after 18 seconds. What did she want her doctor to know that could be heard in 18 seconds? After a bit of coaching she focused on the increase in her daughter’s focal pain, the fact that a diagnosis of SMA (Superior Mesenteric Artery Syndrome) was made, but was not being treated, and that her daughter has thrown up after each meal since a feeding tube was removed after a recent hospital stay.

Once the Mom’s message was stripped of dramatic details, non-related facts, and instead focused on relevant, actual elements of her daughter’s symptoms and medical history, chances that the doctor would listen to issues key to her daughter’s health greatly increased.

2) Communicate with purpose: Complex health concerns are solved in increments. If you have an earache, diagnosis and treatment is straightforward. However,appointments related to complex and chronic health issuesmake the desired outcome ambiguous for both the patient and the physician. If you don’t know what you want to achieve from the doctor visit, it’s unlikely that you will be content with outcome of the visit.

Since SMA is not cured in one doctor visit, my friend needed to think about a realistic outcome for the doctor’s appointment. “I want to understand the standard protocol for fixing SMA, and what plan the doctor recommends to fix my daughter’s SMA.” With this focus, my friend can leverage the doctor’s expertise, and start down a path of wellness for her daughter.

3) Prepare questions. To maximize the 14 – 16 minutes a primary doctor spends during an appointment (less for specialists) prepare questions you would like to have answered. If questions occur to you during the appointment, add these to your list. Some doctors are frustrated that patients spend time researching symptoms, medicines, and treatments on-line prior to an appointment. Given the amount of unreliable data available on-line, this is understandable. The key to being a good patient questioner is to base your questions on valid, reliable data, and your own symptoms and responses to treatment. The National Institute of Health is a great place to understand your medical condition, and what questions you might ask.

It is also critical that you have listened to your doctor throughout the appointment. Use questions to fill in gaps that might not have been addressed during the exam. Let’s go back to my friend and her daughter. The Mom wanted to ask the doctor if surgery would fix her daughter. I cautioned against asking this question. While mentioned as a cure for SMA on some websites, this is not a standard approach to resolving SMA. Also, based on information shared during the appointment, this question might not be relevant.

Finally, avoid questions that begin with “Why?” Why questions invite defensiveness. Why is my daughter sick? Why didn’t they fix her at the hospital? Instead, ask collaborative questions. What do you recommend?What would you do if you were in my shoes? Do I understand that you want me to…? These questions draw on the doctor’s expertise, invite thoughtful response, and focus on problem resolution.

To maximize time spent with your doctor, focus on the portion of the physician – patient interaction that you have control over – how you speak to your physician.  If you prepare for the appointment, focus on what you would like to achieve from the office visit, and formulate meaningful, collaborative questions, you’ll help yourself and your doctor create positive health care outcomes.

Dr. Whiting consults for health care organizations and providers across the United States on leadership, communication, and management issues. Contact: @docwhiting vickiwhiting.com, or vwhiting@westminstercollege.edu

Wonder What Your Doctors And Patients Talk About…Or Don’t Talk About…Behind Closed Exam Room Doors?

Soon you can stop wondering…

For the most us, our first patient experience was a trip to the Pediatrician’s office with our mother. As we age things don’t change much…the doctor’s office remains the center of most people’s “health care experience” except that now we are taking our parents to see the doctor.

The physician-patient relationship is and will continue to be the key stone holding together the rest of U.S. health care system. Why? Because the primary care physician’s office is where the vast majority of health care decisions are made and where most health care is delivered. We are still 13 times more likely to visit our doctor’s office than we are to require an overnight stay in the hospital.

What happens behind the closed doors of the exam room between doctor and patient drives everything else in health care – patient health status, patient adherence, referrals, ER visits, hospital admissions and re-admissions, patient satisfaction and so on. Other than our own personal experience and some vague top line satisfaction survey data, we health care professionals (non-physicians) really know very little about how doctors in our organizations talk with and relate to patients one another once the exam room door closes.

We Know Even Less About The Impact Of Different Styles of Physician-Patient On Our Organizations

For example, what impact does a paternalistic, physician-directed communication style have on patient activation and engagement in hospital-owned physician practices? Or how successful will a physician with poor patient- centered communication skills be when it comes to managing the health of a patient population in an ACO?  Can physicians with poor communication skills hope to retain members attributed to the ACO?  How much money will your organization forfeit next year in incentives and penalties due to poor physician-patient communications resulting in preventable re-admissions and sub-optimal patient experiences?

Exciting New Research Will Soon Provide You Invaluable New Insights Into How Physicians And Patients In Your Market Communication With One Another…And The Implications For Your Organization

It is not often that one gets the chance to become involved in landmark research.  I guess this in my luck day.  Working together with a corporate partner Verilogue in the upcoming months I will be analyzing the patient communication skills of 2,500 HIPPA-compliant physician-patient interviews collected from across the U.S.  The goal of the research will be to deconstruct what primary care doctors and their patients say (and don’t say) to one another and how they say.  We will then benchmark the patient communication skills of physicians in the study against agreed upon industry best practices – aka patient-centered communications.  Ideally the results can be used by hospitals, physician groups, ACOs and health plans to improve the patient-centered communication skills of primary care physicians across the country.

Stay Tuned

As more details of this excite new research become available you will find them here at Mind the Gap first. I look forward to helping advance the field of physician-patient communications. More importantly, I look forward to doing what I can to disseminate and make actionable the finding on behalf of those who will benefits the most – patients.

What things would you like to learn from this research?  Please let me know.

When It Comes To Patient Engagement…It’s The Little Things That Count

I did a dumb thing a couple of weeks ago.   I fell off a ladder on to a cement floor and broke some ribs.

I went to the local ER, was x-rayed, and went home.   There’s nothing they do for broken ribs these days it seems.   The treating Physician’s Assistant told me she had notified my primary care doctor of my fall and resulting injuries.   Mind you this is the same primary care physician who was aware of my 3 recent retinal detachments, major surgeries (Vitrectomies), and prolonged recovery from these events.

It’s been a month since I feel off the ladder….and in all that time I haven’t heard a peep from my personal physician.  That bothers me.

It’s not like I had a problem that needed follow-up…but it would have been nice – perhaps even prudent – for his office to call and see how I was doing.   Why?  The fact that he didn’t call just reminds me that my physician really doesn’t think or care very much about me – as a patient or a person.   Either that or he has yet to read the ER report of my injury from 4 week ago.

In truth everyone I have spoken to about this has had a similar experience.  This is unfortunate for patients and the medical profession.   As patient’s we are continually reminded that physicians don’t have time for us or our problems.  We chide ourselves for not looking for a new doctor in the hope that things might be better.   For their part,  medical professionals meanwhile are clueless why their patients are not as engaged in their health or adherent as they should be.

Want to Engage Your Patients?  Act Like You Care

We all know primary care physicians are very busy and not properly reimbursed for all the work they do.  We also know you all had mothers that “taught you better.”  We all had those same mothers.  Mine used to tell us kids that you “catch more flies with honey than you do with vinegar.”

If you really want to blow the socks off even the most jaded of patients….call them up and ask them how they are doing.  Start with a phone call – it’s more personal than an e-mail.  Just tell the patient that you “know there not ever enough time during office visits to show you care…so when you had a free minute you wanted to remedy that.”

Start with your chronic and frail patients – one call is all you need.  Do this one simple  albeit time consumer thing and your outcomes ill improve, patient adherence will improve, patient satisfaction and loyalty will improve…and you will feel better about yourself.  Think of it as a long-term investment.

You need more proof?  Calculate the ROI of buying and installing an EMR system and hiring a care coordinator and then compare it to the cost of making a single phone call to your sickest patients.   When you compare the saving from the EMR and the cost of your time to make the phone calls….you will be amazed that you didn’t do it sooner!

This ain’t rocket science!  Go out now and make your Mamma proud!

That’s my opinion…what’s yours?

If you like this post you will love my White Paper on Patient Engagement send me your email and I get you a copy.


Stein, T., Nagy, V.T., Jacobs, L. (1998). Caring for Patients One Conversation at a Time : Permanente Journal, 2(4), 62-68.