a family member is not a visitor

On Friday I wrote about issues in patient safety, and I will continue in that vein today

. One big focus of the Children's hospital over the last two years, has been the introduction and development of patient and family centered care (PFCC). There are many aspects to health care that make it patient and family centered. One major aspect is acknowledging the role that families play in the lives  of patients, and recognizing that respect for families is an important part of how we care for patients.

It seems easy for providers to acknowledge this in pediatrics, since our patients are often too young to understand the implications of their diagnosis, or the descriptions of proposed treatment, and we are legally compelled to explain results and discuss proposed treatment plans with legal guardians. However, even in the children's hospital, it has taken some work to make certain that families are included in daily work rounds by the medical team, and the twice daily shift report nurses give to each other when transferring care from one to the other. We have, however, been working vigilantly to monitor how we are doing, to be sure we are speaking the right language, and that everything is clear to every member of the team every day. We are not perfect, but the journey has begun, and we continue to work on it daily.

On our pediatric inpatient unit, we have been doing "patient-centered rounds" now for over a year. Rounds occur in the morning with as many members of the health care team present as possible. The junior resident, or the medical student who has been following the patient "presents" inside the room (rather than in the hallway or in a conference room), and the family members are invited to add to or correct the information given during the process. A discussion ensues, led by the attending physician, and a plan is made for the day that is shared at the time with all the interns, residents, students, nurses, and most importantly the patient and family.

While somewhat stressful to the students and junior residents in the beginning, by the end of a week they are very comfortable with the process. When I have asked the students for feedback, many of them have noted that there were errors in our knowledge that were corrected by having the discussion be open and transparent. Families, knowing the plan for the day, can be our allies in supporting the plan, and helping to prevent harm, waste and error.

What would you want for yourself or your loved one if you were in the hospital?

Comments

I completely agree with you. A little over a month ago, my brother was admitted to a hospital in Trenton, with the unexpected diagnosis of widely metastatic lung cancer. He was very weak, unable to provide even the least bit of care for himself, and was in a lot of pain. He needed help to move his legs, about every 15 or 20 minutes. Ringing the nurse call button often resulted in someone entering the room 30 minutes later, depending upon how busy they were. Yet, here they, too, questioned the advisability of one of us staying with him, stating we needed to get administrative clearance. On the day that I drove up there to be with him, his nurse thought I had not gotten advance permission, and would have to leave. I told her I was staying, and basically was prepared to physically fight with security if someone tried to make me leave.

My brother thought it was amusing, that "his sister, the doctor" was being treated like an ordinary human being. Any time that we suggested our desire to meet with the nurse manager, to discuss issues such as pain relief, etc, he asked us not to, as he was afraid the nursing staff would "take it out" on him.

That is something I hear A LOT. Even among the families of our pediatric patients. Somehow people feel they are at the mercy of the health care providers and don't want to point out how things could be better, because that will surely make things worse.
This is a journey we must all be on. Patients MUST DEMAND to be treated better, and those of us in a position to make health care better, more humane, and patient and family centered must do so.

My brother died after 20 days in the hospital. The last 2 days were spent in the in-patient hospice area, where family were welcomed, without question, and he died with 4 children and one daughter-in-law at his side. It was a wonderful way to die. We should make all of our patient care areas work like that.

Hi, Dr. Ackerman. I stopped by from Dr. Swanson's Seattle Mama Doc blog. After reading through the blog, I have to say that my overall impression is that it is very well written, but I am not sure if your intended audience is parents and patients or medical colleagues (or perhaps both?). As it is written now, it seems more as if it is aimed at your colleagues. It is not that the language is too complex, but more just the overall tone. Most likely, you are just very clinical after your many years in the medical field!

Katie
Thanks so much for taking the time to comment. This is exactly the kind of feedback I need. You have really hit the nail on the head, and I guess you could say that I haven't yet found my "voice" in this blog. And, since it is my very first blog, it is a little hard to know how to reach the people who might be most interested in what is going on here. The answer to your question is that I am actually hoping to reach parents, general folks in the community who have an interest in child health, as well as colleagues. It would be wonderful for other docs to be able to see comments that parents and others might leave that could help guide us in the way we deliver care.

Do you think I am trying to do too much?

I was very careful in the beginning (one week ago) to use only non-technical terms, but then I started to feel that it might not be sounding exactly right. You know, its kind of funny, this is exactly one of the problems we have when we do patient and family centered rounds. How to get our students and physicians to talk to families in a way then can understand, without all the technical jargon. Thanks for pointing this out. I hope you will visit again.

I am glad your experience was positive. A hospital admission is not a trivial event in a child's life. Even when the outcome is good, children can be traumatized by the event, which is why it is so important to have a caring, well-trained staff, and to keep the family members present and engaged (and as well taken care of and as comfortable as possible).

Dr. Ackerman,
As a mom and a Pediatric nurse, patient and family centered rounds was a very positive experience for me during my daughter's hospitalization. The physicians and residents spoke to not only me, but included my daughter and those in our family who are important in our lives. The importance of family support during stressful times of hospitalization/illness can not be diminished or ignored. I know that this concept was a huge culture change, but what a positive difference it made.

Family centered care needs to happen in all age groups. My mother recently had back surgery in a Baltimore hospital and we had to fight to be allowed t stay with her at night. We were told it was unsafe for visitors to stay at night. We felt we were part of her care team. The night I stayed, she was in a lot of pain, kept losing her PCA button and dropped the nurse call light on the floor. The unit was very busy and the nurses were running all night, when we did use the call light, it took quite a while for them to answer. I hate to think how the night would have been if I were not there. On her last night, my father had to insist he was staying and be subjected to the nurse manager telling him how unnecessary it would be for him to stay and that it violated their security policy. Thank goodness he persevered! All 4 days worth of laxatives kicked in and he was busy all night--neither of them slept and you cannot tell me with 18 fresh post ops that day a nurse or assistant could have provided the care my father gave.
We also felt we gave more information to the attending during rounds. Especially since the attending rounded with neither a nurse nor the resident! I have no idea how they communicated but the attending had no idea what changes the resident had already made that morning.
I did send the nurse manager a follow up about family centered care with a webpage link. I haven't heard anything back!

Hello Alice:
Thank you for your GREAT post. The Institute for patient-and Family-Centered Care has written a "white paper" (with recommendations)regarding supporting family presence. We sent a copy to President Obama. We welcome everyone to download it, use it, and help us improve it. The document can be found on our website (www.ipfcc.org) There are many other FREE downloadable tools and examples of "open" visiting policies from around the US that may be used. Thank you again.

Thanks, Joanna. The Institute for patient and family centered care has been a great inspiration to us in helping us forge our mission and approach to patient care. We have instituted family advisory groups, are actively conducting patient and family centered rounds every morning, and are tracking our ability to meet our patient and family centered goals through observation, interviews and checklists. Thanks for pointing out the white paper. I will post a permanent link to it on the right side of the blog.

Add new comment

Plain text

  • No HTML tags allowed.
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.
Type the characters you see in this picture.
Type the characters you see in the picture; if you can't read them, submit the form and a new image will be generated. Not case sensitive.  Switch to audio verification.