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.