tag:blogger.com,1999:blog-32053362.post5112999905004752158..comments2024-03-26T00:25:34.026-04:00Comments on Not Running a Hospital: Patients will teach us how to be compassionatePaul Levyhttp://www.blogger.com/profile/17065446378970179507noreply@blogger.comBlogger27125tag:blogger.com,1999:blog-32053362.post-80867739005065619352010-05-14T18:07:30.225-04:002010-05-14T18:07:30.225-04:00I forgot to mention when I brought a complaint to ...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. <br />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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-43885139999044463422010-05-14T17:49:54.387-04:002010-05-14T17:49:54.387-04:00I'm the anonymous post on 5/14/10 @ 12:33 and ...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. <br />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. <br /><br />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. <br /><br />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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-75132810049048836312010-05-14T15:30:58.486-04:002010-05-14T15:30:58.486-04:00May I add to the issue of compassion in healthcare...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. <br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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. <br /><br />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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-2789686953061224142010-05-14T13:35:06.859-04:002010-05-14T13:35:06.859-04:00Anon 12:33,
I don't know where you're a p...Anon 12:33,<br /><br />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.<br /><br />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.<br /><br />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.e-Patient Davehttps://www.blogger.com/profile/10346452642450264511noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-22183329642433719692010-05-14T12:33:12.825-04:002010-05-14T12:33:12.825-04:00As a patient who has had to advocate for myself nu...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. <br />I have found, once you speak up to these errors or about to happen errors, compassion goes out the door. <br />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, runAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-32910873088055936062010-05-12T07:34:44.592-04:002010-05-12T07:34:44.592-04:00Anon 6:50,
You're right, of course; where els...Anon 6:50,<br /><br />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...)<br /><br />Gotta drum up business somehow - lord knows there's a shortage of sick people waiting for health care.<br /><br />Hahahaha.... I crack myself up sometimes. :)e-Patient Davehttps://www.blogger.com/profile/10346452642450264511noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-90615349499559714942010-05-12T07:05:24.602-04:002010-05-12T07:05:24.602-04:00I am just so glad to be treated in a place that is...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. <br /><br />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!<br /><br />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.nasovnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-17605332073786093482010-05-12T06:50:07.790-04:002010-05-12T06:50:07.790-04:00E-patient Dave, you are so interesting but you hav...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-7261916885249459212010-05-11T19:29:41.451-04:002010-05-11T19:29:41.451-04:00Dave;
It's not "it's a shame errors ...Dave;<br /><br />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.<br /><br />nonlocalAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-38293401690851504512010-05-11T17:14:55.222-04:002010-05-11T17:14:55.222-04:00Interesting conversation about Paul's post. I...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.<br /><br /><br />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. <br /><br />Julie Rosen<br />www.theschwartzcenterblog.comJulie Rosenhttp://www.theschwartzcenterblog.comnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-91545949864604904612010-05-11T07:27:59.237-04:002010-05-11T07:27:59.237-04:00Nonlocal,
Well yeah of course if you're sayin...Nonlocal,<br /><br />Well yeah of course if you're saying "It's a shame errors are so common," you won't get an argument from me. <br /><br />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.<br /><br />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.<br /><br />When that opportunity happens, I'll be the one in the front row raising his hand wildly, saying "Pick me! Pick me!"e-Patient Davehttps://www.blogger.com/profile/10346452642450264511noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-79224677347138336512010-05-10T22:44:00.238-04:002010-05-10T22:44:00.238-04:00Dave;
I don't think you entirely took my meani...Dave;<br />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.<br /><br />nonlocalAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-75301033760795620642010-05-10T22:02:32.960-04:002010-05-10T22:02:32.960-04:00Nonlocal,
Actually, I don't think it's sa...Nonlocal,<br /><br />Actually, I don't think it's sad at all that patients ought to know how their care system works. <br /><br />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.<br /><br />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.<br /><br />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.)<br /><br />(The short testimony document I submitted is <a href="http://e-patients.net/archives/2010/02/testimony-submitted-to-the-adoptioncertification-workgroup-for-its-feb-25-meeting.html" rel="nofollow">here</a>.)<br /><br />Note: only <i>after</i> 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...)e-Patient Davehttps://www.blogger.com/profile/10346452642450264511noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-59372612245051196512010-05-10T21:37:12.597-04:002010-05-10T21:37:12.597-04:00I am struck by two important points in Dave's ...I am struck by two important points in Dave's first comment. <br />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.<br />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.<br /><br />nonlocal MDAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-9513395679655360802010-05-10T19:02:19.623-04:002010-05-10T19:02:19.623-04:00I'll vouch for Paul's "these are very...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.<br /><br />Only once in (I imagine) hundreds of times at BIDMC have I had any discomfort beyond a little pinprick. Good peoples.e-Patient Davehttps://www.blogger.com/profile/10346452642450264511noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-91262696742603179042010-05-10T15:44:40.827-04:002010-05-10T15:44:40.827-04:00Good points. Directionally, I agree, but it does ...Good points. Directionally, I agree, but it does take some time and planning to do it well. Stay tuned and keep watching.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-83072003847004856012010-05-10T15:11:44.339-04:002010-05-10T15:11:44.339-04:00Hospitals have been dancing (often evasively) arou...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?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-23272905749698763242010-05-10T12:18:27.155-04:002010-05-10T12:18:27.155-04:00Perhaps we are just saying the same thing with dif...Perhaps we are just saying the same thing with different words . . .<br /><br />But, I think you miss my final point. If we design the system without patient input, it will not be as effective.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-58868564654447214642010-05-10T12:16:21.398-04:002010-05-10T12:16:21.398-04:00This does not seem to have anything to do with pat...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 <br />we are better prepared to give our patients the best care possible.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-19030391359161941432010-05-10T09:48:19.203-04:002010-05-10T09:48:19.203-04:00See what you started? :)
I took that over-long co...See what you started? :)<br /><br />I took that over-long comment, added some thoughts about patient-centeredness, and <a href="http://e-patients.net/archives/2010/05/patient-centered-care-coordination-and-putting-the-compliance-shoe-on-the-clinicians-foot.html" rel="nofollow">posted it</a> on e-patients.net.e-Patient Davehttps://www.blogger.com/profile/11608258246509102466noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-89143904812381855362010-05-10T08:43:00.542-04:002010-05-10T08:43:00.542-04:00You are overly kind in saying how much I've ta...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.)<br /><br />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.<br /><br />(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!)<br /><br />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. <br /><br />Since nobody was responsible for coordination, any lack of coordination was not a failure in anyone's world.<br /><br />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.<br /><br />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.)<br /><br />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. <br /><br />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!<br /><br />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)<br /><br />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.<br /><br />===<br /><br />Finally, once this "difficult stick" flag is established, please standardize a process of <b>telling the patient/caregiver the flag exists</b>, 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. <br /><br />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 Davehttps://www.blogger.com/profile/11608258246509102466noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-72657257240785907112010-05-10T05:00:49.090-04:002010-05-10T05:00:49.090-04:00They are very skilled people, but these are specia...They are very skilled people, but these are special cases that call for people with extra specialization.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-59201647278553857532010-05-09T21:37:38.896-04:002010-05-09T21:37:38.896-04:00As a cancer caregiver and a two time cancer surviv...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.<br />I am pretty sure that you could convene any number of patient focus groups, and this would be the best and shared suggestion.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-88861481845307148402010-05-09T21:20:19.527-04:002010-05-09T21:20:19.527-04:00The root cause here is the systems amnesia. While...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-15865596175998496382010-05-09T18:40:18.030-04:002010-05-09T18:40:18.030-04:00As you know Paul, patients can add value and a uni...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.<br /><br />Thanks for sharing, it's much appreciated.<br /><br />Linda KenneyAnonymousnoreply@blogger.com