Sunday, May 09, 2010

Patients will teach us how to be compassionate

I have reported below on Dr. Epstein's remarks about the place of compassion in medical care. (I provided the video excerpt because seeing it said is inspirational.) Who can doubt the worth of doctors like the two Dr. Epstein's as they consciously practiced this form of care delivery with their patients? We are so fortunate to have people like them.

But compassion has to show up in the actual physical delivery of care as well. We need to be ever alert that the day-to-day actions we take in the hospital can inadvertently send a signal that we don't care. Even when we have the best of intentions.

Here is an example of a lapse. The bad news is that it occurred. The good news is that our staff immediately responded when it was pointed out.

Here was my initial email to a couple of senior level clinical and administrative leaders:

I'd like you please to look into this and apply a Lean approach to the problem. The instant case was my friend Mary [name changed], but she says she has experienced it before and has seen other chemotherapy patients go through the same problem.

She is a chemotherapy patient who comes in for periodic CAT scans. The chemotherapy affects the blood vessels and makes it difficult to insert an IV for the contrast agent. The techs are not trained to insert these difficult IVs. They try several times, causing pain and swelling of these cancer patients, and then finally the special IV team is called. When Mary has asked for the special IV team to be called at the outset, she is told that there is no way to coordinate those teams with the CAT scan outpatients.

That, to me, is an unacceptable answer. These patients come in on a known schedule. They have a known problem. We do not respect that problem sufficiently to avoid the discomfort and pain that comes from multiple attempts to place the needle.

I saw Mary's arm after her appointment. Much of the lower portion of her arm was discolored and swelled up and painful to her. That is no way to treat a patient with metastatic cancer. We have to do better. Please keep me up to date as you resolve the issue.

In just a few days, I received the following response.

An update on the venous access situation. The working group consisting of the individuals listed below has met. Amy G. is investigating the best way to create a flag in BIDMC systems for those patients who are "difficult sticks", with the accompanying ability to unflag (many patients change vein status as their health conditions change). Once the flag system is functional, clinicians will be trained on how to generate flags for these patients in the system. Amy is also investigating how to provide an electronic dashboard to the Venous Access nurses, so that they know every morning where and when flagged patients have appointments during the day so as to be available when needed. Currently there is a white board/paper/phone based system which doesn't enable proactivity.

As these capabilities come on line, Barbara C. will work on scheduling her team for on-time availability, Donna H.will train Radiology schedulers on the new process to follow when scheduling flagged patients, and training will be deployed to insure that the nurses know how and when to flag and de-flag appropriate patients. No doubt there will be additional actions required as these changes are implemented.

While these improvements are underway, heme onc and radiology will continue their current process for managing patients with difficult veins:
1) When any patient requests the special IV team to insert an IV, the Venous Access Team is called. No one else attempts to insert the IV.
2) Some "frequent flyer" patients are known by the nurses and techs to be difficult sticks and special assistance from the Radiology nurse or Venous Access Team is initiated. The tech will call for Radiology nurse or IV nurse assistance as needed. Right now they can't be flagged ahead of time, so there can be a wait for nurse assistance.
2) For patients who do not make a special request, and for whom there is a reasonable expectation that insertion will be successful, the radiology tech will attempt to insert an IV once. If it is unsuccessful, the tech will determine whether an IV nurse is needed or whether a second attempt is likely to be successful (most insertions are successful by the second attempt). If the 2nd attempt is unsuccessful, the tech will call for either a Radiology nurse who has advanced skills in difficult sticks or for an IV nurse to insert the IV.

I think you will agree that these are good responses, and our folks deserve credit for their quick action. But, thanks to the training I have received from people like IHI's Maureen Bisognano and Jim Conway and e-Patient Dave, I then proposed one additional step:

One more thought on this, which is excellent work.

Why not convene a small focus group of such patients and go through the suggested new process with them to see if they like it or have other suggestions? Wouldn't that be consistent with our attempt to be more patient centered and engage patients in our decision-making?

You see, compassionate care does not occur solely because there are well-intentioned clinicians. It has to result from thoughtfully designed work flows that avoid harm to patients -- work flows that are not dependent on patients' self-advocacy when they are in vulnerable settings.

To do it right, though, compassionate care has to be designed with the help of the very patients we serve.

Try as we might, there is no way to for us to see things through their eyes. We have to welcome them to be there to help guide us.


Anonymous said...

Very excellent thought about including the patients. On the recent WIHI session on Lean, I believe it was Gary Kaplan from Va. Mason (?) who said all their PI teams, if relevant, include a patient.
I have one procedural question, as a novice. Would this change in policy/procedure be best implemented through a small pilot first as a PDSA cycle, or am I not understanding the process correctly?


Anonymous said...

Exactly right!

Anonymous said...

As you know Paul, patients can add value and a unique perspective that even the most well intended clinicians can't. I truly hope other hospital leaders will start seeing patient/families as untapped resources.

Thanks for sharing, it's much appreciated.

Linda Kenney

Anonymous said...

The root cause here is the systems amnesia. While all would agree she was a "hard stick" after many unsuccessful attempts, the system fails to remember that the next time she needs an IV. We shouldn't need a patient to explain this to us. If asked, we'd predict with great certainty, that the patient would be a "hard stick" the next time as well.

Anonymous said...

As a cancer caregiver and a two time cancer survivor (having had multiple chemotherapy sticks), it seems obvious that there is a good solution: hire skilled IV techs/nurses in Radiology. People with "good veins" won't complain, and those of us who are "difficult sticks" will be spared the torture of multiple attempts.
I am pretty sure that you could convene any number of patient focus groups, and this would be the best and shared suggestion.

Anonymous said...

They are very skilled people, but these are special cases that call for people with extra specialization.

e-Patient Dave said...

You are overly kind in saying how much I've taught. It's here at Beth Israel Deaconess that I've learned what openness can be, including being open when you're still failing. (For some slides last week I had occasion to review your earliest posts about central line infections - a BIDMC improvement for which I was grateful when my time came and I received four.)

I applaud the (new?) policy that when a patient requests the special team, staff will comply. And yes, I'm citing "compliance" as a *clinician* issue, tho providers only talk about patient compliance.

(Our mutual friend Linda Kenney, also on this thread, has said that after 26 surgeries she's always surprised when her hospital's staff still doesn't listen to her about how her body's doing during recovery. And it's a big famous Boston hospital. Medicine really does need to listen to patients - we're not as ignorant as some providers seem to think, and we do have a bit of a stake in this!)

Returning to this post, I still hear a pervasive and IMO inexcusable silo problem. "There is no way to coordinate those teams" resonates loudly with silo problems I had during my hospitalizations in 2007. The root cause was that not a single individual anywhere - not even my primary - was responsible for coordinating my care and ensuring that all my "subcontractors" knew what they needed to know, so that appropriate services would be arranged.

Since nobody was responsible for coordination, any lack of coordination was not a failure in anyone's world.

Numerous times during my case, I'd get a call or an in-patient visit from a worker asking or telling me to do something who obviously had no clue about my complex case; he or she was only doing his or her job, and was unaware that her instructions could do me harm. Two were people who didn't know my leg was in the process of breaking due to a bone met, so they gave me instructions that could have been harmful.

More than once as I discussed this with clinicians, they reflected that there's no billing code for care coordination - which brings us back to Amy Ship's "no billing code for compassion." Yet none of these good people felt that they needed to do anything about it! (Or could, perhaps.)

Another example, non-medical but patient-centered, is coordination of multiple appointments. At that time I was seeing my urologist, oncologist, and orthopedist. I asked if I couldn't get a set of appointments on the same day, so it was only one trip to the hospital. The good people talking to me sounded like I was a little crazy to think such a thing was possible.

I've since learned that Lahey Clinic has people who do exactly that; apparently they've rearranged clinical hours to make this feasible.Imagine: doctors rearranged things to be more available in patients' lives!

Yes, if you gather some "frequent flyer" patient families and ask what would make their lives better, you'll get some invaluable input - and at no cost except the price of listening. And maybe some mileage and fresh fruit... btw, please quit serving us cookies and cake at health events! :0)

Also, non-frequent-flyer patients will give you different inputs on the "new customer" experience, which is pretty important too as someone enters their first scary hospital experience.


Finally, once this "difficult stick" flag is established, please standardize a process of telling the patient/caregiver the flag exists, how the staff uses it, and that they should always check with the worker to ensure the flag is currently correct in the system. That's empowering; it enables the patient to influence how things go.

I'll tell you firsthand, that by itself gives a patient a helpful sense of having some control over things. The WORST thing for a desperate patient is to speak up, asking hospital staff for what we need, and be told it's not possible.

e-Patient Dave said...

See what you started? :)

I took that over-long comment, added some thoughts about patient-centeredness, and posted it on

Anonymous said...

This does not seem to have anything to do with patient compassion, rather a lack of resources and a disconnect between management,IV nurses, radiology technologists, oncology nurses, schedulers, and patients themselves. Hopefully there will be a better system developed with these so called "flags", so that
we are better prepared to give our patients the best care possible.

Anonymous said...

Perhaps we are just saying the same thing with different words . . .

But, I think you miss my final point. If we design the system without patient input, it will not be as effective.

Anonymous said...

Hospitals have been dancing (often evasively) around the participation of patients in the design of care. While BIDMC is recognized as a community leader in compassionate care, surely there could be bolder moves on the horizon. Rather than piecemeal and variable improvement, why not establish a goal of 100% of QI work in 100% of departments will include patients? What process in a hospital can be argued not to touch the very people served? How courageous can we set the metrics of patient-centeredness?

Anonymous said...

Good points. Directionally, I agree, but it does take some time and planning to do it well. Stay tuned and keep watching.

e-Patient Dave said...

I'll vouch for Paul's "these are very skilled people." I never had chemo so I can't vouch for the difficult cases but I've always been impressed with how well they manage to stick me without a lot of trouble.

Only once in (I imagine) hundreds of times at BIDMC have I had any discomfort beyond a little pinprick. Good peoples.

Anonymous said...

I am struck by two important points in Dave's first comment.
First, the silo effect - as one of my partners once observed, "everybody's responsibility is nobody's responsibility" - e.g. if no one is assigned to coordinate, no one feels responsible to coordinate. BIDMC's Lean teams seem a perfect solution to this problem.
Second, "tell the patient the flag exists" - while a good idea, it is also sad, because it means patients have learned that in our broken system they must double check, oversee, and remind at every turn. How would it feel if the health care system actually worked reliably, and the patient could just deal with being a patient? That's hard enough.

nonlocal MD

e-Patient Dave said...


Actually, I don't think it's sad at all that patients ought to know how their care system works.

In my keynote last week at the IHI / ICSI Colloquium in St. Paul, one of my requests was "Get over the perfection thing." It's a form of denial, plus, it leads to lawsuits. Healthcare is complex.

I'm known for advocating for patient access to the medical record, and increasingly I'm saying a big reason is to be a second set of eyes.

Prepping in February for a policy meeting in DC, I got my eyes opened bigtime about the reality of data quality in even the best healthcare systems. My role was to represent the patient POV in that hearing - but what can a patient do, from outside the system, against overwhelming technical challenges? My answer was that our goal should be to improve quality, and the best, most readily achievable way to do that was to let patients see the record, to simply check for mistakes. (And to mandate amnesty, so providers would need not fear lawsuits.)

(The short testimony document I submitted is here.)

Note: only after this did I participate in BIDMC's lean retreat. So at the time I didn't even understand those principles: this was plain old "What could we do that would be useful?" (Well, okay, I was polluted by a few years of reading this rag here...)

Anonymous said...

I don't think you entirely took my meaning. It is no accident that many patient advocates and e-patients are so due to medical errors. No, of course I don't want to back down on the e-patient movement (despite the tongue-lashing you administered on THCB (:), but would you agree with me that patients and their families would not have to be so anxiously vigilant if the system worked better? So sure - tell them about the flag; but hopefully it will be right every time they ask and then they can stop asking, and rest. That's all I meant.


e-Patient Dave said...


Well yeah of course if you're saying "It's a shame errors are so common," you won't get an argument from me.

20 years ago (+/- 10) it wasn't rare (as you may be old enough to recall, heh) to find errors in a credit card statement. That industry pretty much has that cleaned up: they've developed pretty strong processes for not allowing bogus things to get into the data stream, and for stomping on it when it's detected. This industry can do something similar, but we're just now climbing that curve.

There's a special (and significant) problem in HC, btw, which is the difficulty of testing with real-world data. That was a key factor in my own PHR adventure in April 2009: the data transfer software was tested on theoretical data but never on a messy real-world case like mine. So I'm hoping some noble souls will not only donate their organs to science, they'll donate their EMR - perhaps even while living.

When that opportunity happens, I'll be the one in the front row raising his hand wildly, saying "Pick me! Pick me!"

Julie Rosen said...

Interesting conversation about Paul's post. I'd like to add one thing, apropos incorporating patient input into health care system design. The Kenneth B. Schwartz Center, whose mission is to support and advance compassionate health care, has long believed that incorporating the patient perspective into healthcare delivery is critical to creating a more compassionate system. We recently completed a pilot project at three healthcare sites that sought to do exactly that. Called the Patient Voice for Compassionate Care: Schwartz Center Dialogues, the program sought to bring the experiences and perspectives of patients and their families directly to caregivers in a series of facilitated discussions. Another goal was to help patients and their families become stronger advocates and partners in their own care. By most accounts, the pilot was very successful, and each site is committed to making some of the changes that the patients advocated for. But it was a very labor and time-intensive program, so we're seeking ways to replicate it in a more feasible manner.

The three pilot sites were Beth Israel Deaconess Medical Center Healthcare Associates in Boston (a primary care practice); Family Health Center of Worcester (a community health center),and the Cancer Center at Yale New-Haven Hospital in Connecticut.

Julie Rosen

Anonymous said...


It's not "it's a shame errors are so common",but I'm continuing the discussion via email.I can't find few enough words to explain myself better.


Anonymous said...

E-patient Dave, you are so interesting but you have erred terribly by asking that cake and cookies be removed from health meetings. This is most unsound thinking!!! Next you'll be challenging the health benefits of a diet based on chocolate.

nasov said...

I am just so glad to be treated in a place that is actually trying to change the system and solve this problem. The vein issue probably sounds minor, and for years I thought I should just grin and bear it. But chemo is not nice to your veins. Since I'll be on chemo for life, having sticks that are very, very painful yet very, very frequent whenever I have procedures outside of chemo is just too much. Yes, I have a port, but only trained RNs can use it.

Paul Levy saw my arm and then the staff got right to work on it, and I know they will do this well. Notice he didn't solve the problem -- he understood it and then went to the people who have the ability to change things. He's not a CEO barking from on high but a colleague who challenges people to do their best. It makes the hospital a place where everyone can be at their best, and that is unusual in any workplace!

So thank you for everyone who is fixing this -- I think you'll be the first hospital who does. Yet another reason I chose you for treatment.

e-Patient Dave said...

Anon 6:50,

You're right, of course; where else but a hospital can one find giveaways of sugar-based ingestibles, with all the proven effects of IMS? (Ingesting More Sugar...)

Gotta drum up business somehow - lord knows there's a shortage of sick people waiting for health care.

Hahahaha.... I crack myself up sometimes. :)

Anonymous said...

As a patient who has had to advocate for myself numerous times because of errors that have occurred or were about to occurr, providers to not look highly upon this. Patients are sick enough, needing to know the ins and outs of medicine to prevent further harm is a lot of responsibility to give a patient when they do not have a medical degree.
I have found, once you speak up to these errors or about to happen errors, compassion goes out the door.
It is very important to align oneself with a doctor that will advocate for you at all times under all circumstances and if this is taking place, run

e-Patient Dave said...

Anon 12:33,

I don't know where you're a patient, but I'm sure sorry you had that experience. All I can say is, I know first-hand it's not that way everywhere. Modern patient-oriented hospitals have learned to put the "customer" first, as most industries learned years ago. It sounds like the one where you were is in the dinosaur category.

Have you asked the CEO's office if they have a complaint process or someone responsible for customer satisfaction? During the process of "growing up" in this regard it's not unusual for bad examples to be dealt with effectively - people do change. If they DON'T have a customer satisfaction executive, that tells you something about the place.

For instance I'm leaving Bank of America after many years as a customer (as they were Bank of Boston, BayBank, Fleet and others) because they recently discontinued their "Voice of the Customer" program: they no longer have a process for hearing individual customer problems. And let's just say it shows. :-) So, I'm voting with my feet.

Anonymous said...

May I add to the issue of compassion in healthcare - the words medical personnel use to describe their patients are incredibly important. They are important because the patient may overhear their word choice and become offended, lose trust in their provider, feel even more demoralized than they already do, and feel demeaned, dehumanized and objectified.

These word choices are also important because they frame the outlook of the provider toward the patient. That is, if a provider refers to the patient in anything less than a respectful manner that maintains that patient's "personhood" and dignity as a human being, the provider's own thinking, as well as that of those who overhear him/her, changes and the patient becomes less and less important and more and more of a (potentially annoying) dehumanized disease.

I bring this up because I personally find the term "frequent flier" offensive. While I know that there are some people who frequent hospitals only for attention, most people do not want to visit hospitals. The term "frequent flier" has a very negative connotation. It implies that the patient in question tends to come to the hospital even if he/she doesn't need to. Most people who end up in the hospital are pretty discouraged about it. They don't need to be reminded of it by overhearing such a term. And providers don't need to think of patients in such a way by using such terminology.

The term also has an underlying meaning that may not be obvious to people who don't have experience in the healthcare sphere - it implies an irritating patient who one dreads seeing each time they have to come back to the hospital. Imagine how we feel about being back... particularly if our providers think of us as nothing but an annoyance. That is not compassion. That is a way of interacting with other (sick and vulnerable) people that most providers would admonish their children for if they observed them engaging in such behavior.

I do realize that this has little to do with the original post and for that I apologize. However, it does fit well under the heading of Compassion, so I thought I would express my opinion.

Also, I know that many clinicians read this blog and that some of the terminology they use to refer to patients has been deeply entrenched over the course of decades. So, it only makes sense to make them aware of what patients think about these terms and the people who use them. Otherwise, they may not even realize how hurtful they can be.

Anonymous said...

I'm the anonymous post on 5/14/10 @ 12:33 and first let me thank the anonymous post on 5/14/10 @ 3:30pm. If you are a clinician, God Bless You!!! I am a patient who is a "frequent flier" becaues I get sick frequently. I HATE needing to be in the hospital but given my medical problems, I often have to be admitted and it is degrading and demoralizing at best. To hear terms such as "frequent flier", which I've heard not only about myself but about other patients to me from clinicians if horrible.
I often find that when things are straight forward for providers, they are much nicer and have a lot of compassion but when it is complex, they aren't always so nice. If it is complex for the provider, think of how difficult for the patient. Now, I'm not saying all providers aren't compassionate at all. There are a lot of great ones but there aren't enough of them.

e-patient Dave, I'm a patient in Boston. I understand what you are trying to get across with changing banks but to liken changing hospitals, doctors to changing banks is not close to being the same. when one is ill with complex medical issues, it isn't as easy as changing banks.

In terms of CEO and complaint process, of course they have department but all that will do is make matters worse. I reported an occurence once and it fell on deaf ears. I'm glad you have nothing but positive experiences and I truly hope it remains that way for you.

Anonymous said...

I forgot to mention when I brought a complaint to folks in the past it was prior to current CEO. I am hopeful should I ever need to go down that road again, it would not fall on deaf ears.
Again, few bad experiences can cloud a patients overall experience. All my experiences have not been bad at all. My PCP and usual team of providers are exceptional. It is when being admitted that problems have taken place.