Friday, May 16, 2008

Lessons learned from switching sides

An email letter from a staff member to me. Many, many helpful suggestions that we will work on.

Paul – I have unfortunately have had the experience over the past several months to switch sides from supporting MDs provide care to patients to that of becoming the loved one of a patient. My mom was admitted here on 12/29/08 with what was thought to be a stroke. After five weeks of treatment and the inability to control seizures that she was having every three minutes, it was discovered that it was not a stroke, but instead a Grade IV Glioblastoma.

Since my mom’s first admission, she has been readmitted four other times. In total, I think my mom was an inpatient at BIDMC, 10 out of the past 14 weeks. For family reasons, coordination of her care has fallen to me. We have many supportive family and friends, but at the end of the day it’s just the two of us. Her prognosis is not good. They say less than three months. I never thought I would get to the point where I am o.k. with her passing, but life is not for existing, but living. She is now in long term care and luckily, has only had a few episodes of pain. Anyway, I have written and re-written this email in my head a million times, but seeing your (May 7 SPIRIT update) email today has prompted me to sit down and send you a few of my observations over the last ten weeks. I am sorry this is so long, but each bullet reflects an important point I wish to emphasize.

Here they are:

-- The nurses are phenomenal!!! Time after time, I have been impressed that here is this woman who they only know through my description (one of the results of the tumor and subsequent seizures is that she cannot speak) and the nurses are so dedicated, caring and empathetic. My mom has gone from a woman who walked seven days per week, took down her own fence this past summer and cared for my children to a woman who can’t talk, walk, wears a diaper and has to be fed. They somehow without even trying have time after time preserved her dignity.

-- The coworkers (patient care technicians) are also phenomenal. They do not receive near enough credit. Their jobs are very hard. They lift, roll, clean, feed patients constantly and do so quietly and patiently. They must go home exhausted every night.

-- Communication, communication, communication. If we could find a way to better communicate w/ families, our Press Ganey scores would exceed 90% instantly. I have worked here for 12 years and at times was so frustrated with my inability to find out what was going on. I had instant access to my mom’s oncologist and neurologist, but in most cases, families have to go through residents. The residents are so busy and they usually see the patients first thing in the morning prior to a family member coming. In addition, once you get to know one, they switch services and you have to start all over again. The same thing with medical students. One day over a weekend, I waited eight hours in my mom’s room to speak to a resident. No family member should have to do that. I at least would go into my mom’s record to read the notes (with her permission of course), but people that do not work her do not have that opportunity. If there was a way to block certain sections of OMR (online medical record), but provide families access to others or develop a summary page for family members that would be great.

-- Another issue is communication between specialties. My mom was part of the Neurology Service. She started on Stroke, moved to Epilepsy, then to Neuro. Oncology, then back to Epilepsy and now is back on Neuro. Onc. Did you follow that? I have come to learn that Neurologists are highly specialized. You can’t ask a Neuro Oncologist about your mom’s seizure meds. You have to go to her Epilepsy Neurologist. Depending on what floor you are on, the quarterback varies. My mom was transferred from one floor to another and she ended up with a whole new attending that I had never met. What made it worse was she had one for the weekend and then a new one starting the following Monday because it was a new month. Again, I work here so I knew who to call, but imagine the 80 year old man trying to take care of his wife. Lack of information is so frustrating. There needs to be a better way to communicate with families and patients.

-- Add-on surgical procedures need to be better coordinated. My mom’s biopsy was an add on for a Friday. Room Service forgot to bring her dinner on Thursday night so her last meal was lunch at around 12 noon that day. Pre-op did not come to pick my mom up until Friday at 6:30 pm. We then waiting there for three hours. She did not go into her biopsy until 9:30pm. The surgeon was ready for her at 9 pm, but we had to wait 30 minutes for her Halo to be delivered for the procedure. The surgeon, nurse and anesthesiologist sat there waiting. My mom’s roommate was an add-on for Monday. Her last meal was Sunday at 6 pm. She got bumped on Monday and not taken until 10 am on Tuesday. She did not eat for almost two days.

-- Patient Satisfaction Surveys – Did you know that you receive one for every admission? That means we have received four. I filled out one. There has to be a savings there. Her experience did not change that much between each admission to warrant four separate surveys.

-- We need better discharge planning. I found three medication errors during each discharge and I am not a doctor. I can only imagine the poor family member that does not speak English. On the day of my mom’s last discharge, the intern kindly called me at home and told me she would be discharged by 1 PM to a long term care facility in Hingham. I got there at around 3 PM and was surprised she was not there. I set up her room and waited. I asked the unit coordinator at the front desk about it and she said she would be in the same room and there must be traffic. I went back and waited. I finally called thr floor at the hosital where I was put on hold for about five minutes. Finally, the nurse got on and said she had her all ready to go at 1 pm and they told her she was not being discharged and did not know why. I then asked to speak to who did know and the intern got on, apologized for not calling me and said it would not be until Monday due to the antibiotics that they could not give to her at the rehab. The following Monday, I was on my way to meet her there when I received a page from the case manager that they had to move her to yet another facility because Hingham would not take her. Luckily, I am happy with where she is, but what a fiasco.

-- MDs need to learn how to give options to families. Her Oncologist has recommended no further treatment with hospice. That was a big pill for me to swallow. Our family does not give up. Once I was able to process that I felt pressured by him to sign off on a DNR and agree to “his” recommendation. After I really thought about it, I realized that in fact that there was no decision to make because she was not even eligible for treatment given her low counts. I had to really push back with him. I’m not sure most families would feel comfortable doing that.

-- Case Managers need to meet with families more. When selecting a rehab., I was given a photocopy of a book with rehabs in our area. The case manager had never been to one of them and recommended I go to visit. I have three children, another family member needing support, a husband, a mother with a brain tumor and full time job. When was I going to do that? This was going to be the place my mom would probably die. I wanted it to be excellent. It would have been helpful if she or another case manager could provide me with some information on the facilities, i.e. the DPH report, testimonials from other patients, etc.

-- Families need to understand the financial implications of recommended treatments and care. Her doctor recommended long term care with hospice. What he neglected to say is that although hospice is covered, long term care room and board is not. This means that if she is not eligible for nursing care or rehab. we have to pay room and board of over $300/day. Luckily, my mom has savings for this, but I was not made aware of this until I sat down with the Head Nurse at the long term care facility.

Thank you for listening.


Anonymous said...

Although many of these points are valid, I must comment as another staff member that many times people who are "in the field" tend to generate issues where in fact there are no issues. It's sort of a part of human nature - if you have some knowledge about a system, you have an intrinsic need to know everything - where most family members don't really need to have that much information about the inner workings of the system. I guess what I'm trying to say is that it's a system designed to interact with laypeople, and that often doesn't sit well with medical professionals, and in clinical practice I've seen this create a lot of tension. Of course, however, many of the points the author of this letter raises are unfortunate but fairly common flaws of the way things work in a hospital, which certainly need to be addressed.

Anonymous said...

I disagree with Anonymous. This letter is so meaningful and so real. Just went through a very similar experience with my mother, and taking each of these issues and resolving them will go a long way to improving care for patients and families. Bravo to you, Paul, for posting this and taking this on!

Anonymous said...

Thank you very much to the poster.

Paul, items like this are why I read your blog. So thanks for posting it! (I know you love your soccer postings, so be it...)

I disagree with the previous poster that these are only partially valid points because the system was tailored to "lay people". The system should be taylored to care for sick people and their families, regardless of their background. Yes, treating medical families often is different but caring for them should not strike them as care of a lesser quality.

As professionals in the medical field we often miss to see the other side. "Little" things like not really knowing what the rehab facility looks like (which strikes me as odd). Or not taking into account that relatives desperately want to help but actually need to take care of their life that happens away from hospital. We tend not to see this because it happens out of our sight and thus is less real and urgent to us.

Trying to get hold of the treating physician strikes me as a central point here. Maybe the physician could be alerted to a relative meeting request and call the relative for urgent questions at a later time. Strikes me as more feasible than relatives having to wait in the patient's room for hours with uncertain outcome.

Not so sure about reading the records, even as staff. There's potentially things in the history that are not suitable to be seen by relatives either (depends of course on the patient and circumstances). There's a reason for medical confidentiality.

I wasn't aware neurology was that sub-specialised nowadays but I never deal with the adult world anyway... Holy smokes!

It doesn't sound like the Oncologist wanted to give options re end of life treatment, to be quite frank. This might be ok in some cases (again, depends on the exact circumstances) and I won't comment on this any further.

We're never going to able to get it all right. Keeping an open ear for the pressing issues of patients and their families is an important way to keeping close to what these families require (rather than what we think they require.

It's interesting to see that we seem to have the same problems in many places (if not all) of the developed world (I'm writing from Australia).

Anonymous said...

As a medical student who has been around BIDMC quite some time now, I feel I have some feedback. It is an interesting point to have a written daily report online for families but it would be unacceptable to give bad news that way and unfortunately around a hospital those are more common than we would like to. In other words its very dangerous to implement such system.

I have to agree with the prior comment, knowing the system highlights a lot of faults that otherwise one could let go, this is why the poster comments are so valuable.

Anonymous said...

I totally disagree! For the last 2 years, my mom has been fighting and living with bladder cancer, which has spread to her bones. We often do not get full answers to our questions or a timely response until my sister ( an RN who lives in CA) gets on the phone or on a plane. You do not have to work "in the field" to understand that the explanations you're getting are incomplete or short cut because the MD or other provider doesn't want or have the time to explain in detail and doesn't really want to open the box on all options.

Anonymous said...

Anonymous 6:40am discounts too much of the experience written here. In reality, these frustrations are expressed widely in the community, especially with complex cases such as these. The writer had additional access and information due to BIDMC employment, but most caregivers do not. Most sit for hours without being able to read a medical record directly. Most do not know who to call to 'work around' a problem. Most do not know the resident/attending scheduling patterns, or who, in fact, to push back to when not satisfied. There are a lot of great 'call outs' in this piece that are central to the way care delivery systems work - or do not. The research is clear that patient/caregiver information and empowerment brings higher quality of care. I predict that the mother received better care because the employee 'pushed back' at the system. But you have to know what buttons to push.

Anonymous said...

I will just add on to these postings to say that I definitely disagree with the "lay people" concept and system. In this day and age when there is so much information available, patient and their families need real answers and need to be given educated choices and options. It is not that the "lay people" don't want to know more. They're just not given the option, I guess.

A very good point (among other ones) that the writer of the letter makes is "communication". If patients and families are aware as to what's going on and what to expect, their worries and level of stress would be much better controlled.

Anonymous said...

I don't know if this will serve as consolation, but similar care/lack thereof happen in all levels of care and in all healthcare settings (my family and I have experienced them). Not only could healthcare be improved markedly and probably have a much improved outcome if some/most of these issues were addressed and resolution found. ...and millions/billions of $$$ could be saved. And, if you look within each of the scenarios cited. isn't communication underlying all of them?

Anonymous said...

I am Anon640...
I think maybe what I said wasn't interpreted the way I meant it.
All I'm saying is that I've seen many many families with healthcare professionals who have a much harder time being on that side of the care delivery system than those who are not, as I said, "in the field". I certainly do agree with most of the points the original author brought up, and as I said they are unfortunate flaws of the current system that need to be resolved. But again, I must reiterate that for some reason there always seems to be much more tension between "the system" and family members if those family members have a medical background. I'm note sure why this happens - perhaps because they're aware of all the worst case scenarios and system flaws. And yes, I have been on the other side of things both as a patient and family member, and have experienced similar problems -- but I try very consciously to adopt the role of patient, not medical provider. I actually don't like my providers to know that I am also a provider, because I *want* them to treat me like every other patient - in short because our patients do get excellent care and the relationship is much different if it gets skewed. It's an interesting phenomenon, but I've seen it time and time again. It was even a theme on an episode of scrubs!

Anonymous said...

I agree with anon 5:48 regarding not wanting providers to know you are also in the field. I have found that makes them assume I know things that I don't know (yes, medicine is VERY specialized these days!), or makes them feel they don't have to tell me certain things. What it does NOT do, interestingly, is provide me with any better or more courteous communication than the poor efforts described in the letter to Paul.

And kudos to you, Paul, for posting this even though it is not all favorable. We all know that the same issues voiced could be encountered at any hospital in the country, but this demonstrates that you really do put your money where your mouth is.

nonlocal MD

Christian Sinclair said...


Thanks for posting this insightful feedback that others have noted could easily be happening at any hospital in the US (or Australia) right now.

The core issue appears to be communication or lack of efficient communication. Doctor-patient communication, doctor-doctor communication, doctor-family communication, and so on and so on. Coordinating care is probably 80% of the medical workday. (I made the number up, but it is considerable)

Yet efficiency and communication skills are rarely empathized in medical education given all the other material to be covered. Explaining what has happened during the hospitalization is one thing, I as a palliative care doctor (and the team I work with) do very early in beginning a consultation with family. Just explaining what has happened, and then going step by detailed step of what will likely happen next is probably one of the reasons palliative care teams often get mentions of appreciation from families.

I would be curious if this letter writer's mother received any support from a palliative care team?

If you have time to write about BIDMC's palliative care team in the future that would be great Paul.

Anonymous said...

anonymous640: I think people with medical backgrounds generate more "tension" because they have more knowledge and feel more comfortable raising issues that the rest of us just believe we have to bear and suffer with in silence, either because we don't know any better, don't know with whom to raise the issue, or we fear that our loved one/the patient will suffer or be punished if we complain. I can also assure you, from personal experience at BIDMC and other hospitals, that every single one of these issues is real, occurs throughout the health care system, and is important to fix. Many thanks to the staff member who wrote this entry, and to Paul for posting it. I hope Paul will share with us the specific actions and progress that BIDMC makes in working to address these problems.

Anonymous said...


Thanks for the reminder about palliative care. I will cover that some day. We have a marvelous program in that area.

Anonymous said...

Paul - thank you for the post. My father went through a similar situation at a hospital in Florida. Fortunately for us, a family member worked for the hospital and was able to get answers when the residents/attendings/interns/nurses were unwilling or unable to spend time to explain. From my experience with my father (and a more recent experience at the same hospital with a family member having a stroke) I learned that patients (and their families) need to be responsible for their own care. Demand answers and options and time with the physicians. Make a stink if you are ignored. Most importantly, the patient or family member should keep a diary so that you can share your experiences in the future (risk managers love detailed examples).

Anonymous said...

i appreciate the opportunity to hear family member thoughts at such a difficult time.

it seems to me that the residents in an academic setting have the responsibility to communicate with the family, not just round quickly in the morning. however, in private practice setting, unfortunately sometimes i can't be available at all times for family members-they are going to have to accept phone conversations in lieu of face to face time if they can't make it. i usually let the nurse know when i'll round the next day and ask for the nurse to grab a phone number for contacting family members. however some families, particularly big ones, demand a lot of time and energy for their inpatient loved one, frequently out of proportion to the degree of illness (obvioulsy not in this case). in these cases, i use the hospitalists to serve as the communication source. i know they hate it, but at least the families have a contact person who is around all day long, not tied up in procedures. it makes me sad to hear that physicians don't have time to talk to families. that's the only thing keeping me going, but i live in a rural area where i don't have a high cost of living and don't feel pressured to maximize the number of patients seen per day. it is one of the negative aspects of the corporatization of health care.

Alexis said...

I've lived on both sides of the patient/practitioner world, and this post really hits home for me. I should state here that I've never been to BIDMC, so my experiences are from a different system. However, I suspect they have some universal value, especially as they reflect the content of your post.

I think the biggest problem we have discovered over the years is not the way the attending/resident/nurse/whomever talks to us, it's how they talk - or don't - to each other. On any given day, we were told multiple plans, and when you inquired about any of them, the current practitioner had no information as to why the plans had changed. Things like lists of current medications were constantly disappearing from the chart, electronic or paper, to the extent that at one point, I was carrying around 15 photocopies of my sister-in-law's medications, just in case. Even knowing the system as I do wasn't helpful - I could wonder why no one appeared to be looking at the summary page of her electronic record, but there was often no time in the horrendously busy environment of a teaching hospital for all the necessary people to have all the necessary information. There has got to be a better way to streamline communication between practitioners. We often ask families to have one point person with whom the medical staff can interact. Why can't we have something at least vaguely similar on the medical side? Often even if there is such a person, they themselves have been left out of the loop on decisions by other staff, negating their effectiveness.

I don't think that being a medical person has been of too much use to me, except that I knew to be patient with the staff, and I didn't experience the vast sense of helplessness that some of my other family members did. I think it's not that people "in the field" see problems that aren't apparent to others, it's that "lay people" feel completely disempowered by a system they don't understand, and thus can't articulate the problems they have. How can anyone know that you're confused and frustrated if you don't even know how to ask the questions, and feel guilty for being suspicious that "something's just not right"?

Conversely, often patients ask questions that seem ridiculous to medical practitioners, and may press points that seem irrational. Staff gets frustrated in return, and the communication breaks down. But that's a far more easily remedied situation (usually one good conversation is all that's required) than the tangled mess of inter-staff communication lines.

e-Patient Dave said...

I have two points to add to this moving story. (Thanks SO much to this staff member for taking the time to write this.)

First, I agree very very strongly with the need to coordinate care across services. To me this is a massive oversight in the existing system. (I presume that if it's a big crack in the system at BIDMC it's not generally better elsewhere.)

I've heard through the grapevine that it's due to two things: (1) people are so highly specialized that they really believe it's NOT their responsibility, and (2) nobody anywhere in the system gets paid for doing this.

It's astounding. It's exactly as if you were building a house and your banker would pay each subcontractor but you weren't allowed to have a general contractor - and any resulting problems were, well, your problem.

In my case there were problems when the people attending my nephrectomy knew nothing of my rotting femur and did nothing to get information about it. In this staffer's story it was much worse.

At a much lower level, I was astounded to learn that doctors aren't allowed to count emailing or even phone calls as delivery of service, for insurance purposes. They have to donate that time.


The second has nothing to do with the case and everything to do with the fact that you're posting it.

Last weekend I attended the Conference for Global Transformation in San Francisco - a group of people who are truly out there transforming the world's future. One speaker said something that brought BIDMC instantly to mind. He said:

"In a values-based organization, a janitor can go to the CEO and say 'Your actions don't match our value,' and be heard." Nowhere in my life have I seen an organization this size where that's true at all levels.

Thanks for continuing to lay it all out on the table.

Anonymous said...


Your analogy to the general contractor is a good one - but in medicine, it would be like all the subcontractors thinking they are smarter and more highly trained than the general contractor and therefore they don't have to answer to him. I don't know if this goes on in construction, but it sure as heck goes on in medicine - to our own detriment as well as the patients'.

Anonymous said...

This poster made comments that are exactly true. The issue is not specific to BIDMC, this is part of our healthcare crisis in America. Every single one of us who has to work with a healthcare system on behalf of a friend or relative or ourselves will witness what this individual did. Transformation must happen within our medical care systems.

Anonymous said...

Perhaps I should add to this, as a staff member whose spouse was recently admitted twice.

The most important item I would emphasize is communication. A couple of events to illustrate:

1. My wife was given potassium through her IV, enough to cause her to want to (in her words) gnaw her arm off. She bore it because she was told her potassium was 2. It was actually normal.

2. She was NPO for >24 hours, and yet Room Service came in asking if there were any food trays to be picked up. Why? Doesn't everyone know when a patient is NPO?

3. Speaking of NPO, she was offered something to drink when she returned from her procedure, but fortunately asked the nurses to double check her orders. She was, of course, NPO. Evidently the procedure team hadn't spoken to the floor team.

While there is much we do very well (and some of her nurses were outstanding), we can, and should, do a better job communicating within our care teams and with our patients.

Anonymous said...

I am the BIDMC employee that wrote the original email to Paul about "switching sides". My mother died a few weeks ago and today I went to see my mother's favorite nurses to gave her a bracelet that I had given to my mother during one of her hospital stays to "brighten up her hospital jonnie". It was a very emotional moment for me, but she was the person that I thought of every time I looked at that bracelet. This is the nurse had been with us since her diagnosis and had made a poster for my mother to "fight hard" while she was on vacation. She was the nurse who helped move my mother off of her bed sore when her nurse that day said she needed to finish her lunch (truely the minority at BIDMC). This is who I think of when I recollect the people who took care of my mother.

All I can say, is that after a two month stay in a long term care facility, BIDMC is doing a phenomenal job and their dedication to caring for patients and trying to get better every day at it can not not be challenged. The same issues exist throughout our health care system, but the difference is that BIDMC leadership cares. My mother's long term care facility was for profit and although the individual nurses and aides tried very hard to care for her, the resources just did not exist. I compared her nurses to flight attendants as they walked up and down with their medication carts distributing drugs. They had no time to be nurses. In addition, we did not receive any hospice assistance until three days prior to my mother's passing and this was because a family friend knew a hospice nurse; had I requested hospice care, my mother would have been transferred from covered under Medicare to not being covered at all, other than a hospice consultation to the family. What is right about that?

My mother died in peace. I know she is in a better place. This experience had been extremely eye opening for me. I continue (from my first day at BIDMC) to be proud to work here, but will always strive for communication, communication, communication.

Anonymous said...

Many thanks for writing again. I plan to repost this comments as a new column right now.

Anonymous said...

I am sorry this family was not able to receive hospice care, and the reason/mechanism for that should be clarified. My mom died at our home with hospice care, and it was very helpful and funded by Medicare. In this case, there were apparently issues with payment for a long-term care facility, which is separate from hospice care in the Medicare system. However it is organized or financed, palliative care should be available. it can make a world of difference to patients and their families.