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Pediatric Palliative Care

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Post Pediatric Palliative Care in the Home
Author: shelley
Date: Jun 4, 2008 10:23 am
We are beginning a pediatric palliative home care program in a formerly "adults only" home health, infusion therapy and hospice agency. We are debating how to structure the pediatric program within our organization. Currently, our home health (infusion reports up through home health) and hospice programs are separate from each other and report up through different directors to the executive director. Our pediatric program will provide home care (home health, infusion therapy, rehab therapies and/or hospice care) to children with life limiting conditions. Our intention is that the team assigned to a patient at admission will follow the patient through the continuum of care to discharge. I know that many of you have wrestled with this issues and I hope that you are willing to share your wisdom with our organization. Any advice?

Thanks.
Shelley
Replies: order by [Date] [Author] [Subject]
Re:Pediatric Palliative Care in the Home (by SharolHerr on 06/04/2008)
Pediatrics is very unique and it is hard to generalize what we know in adult program development. I'm checking with CAPC to see if we can find you some palliative pediatric experts to check in with. Once that information is available I will post it. Sharol Herr, RN, MSEd, CHPN; Nurse Educator/Clinician; Mt. Carmel Health Palliative Care Leadership Center; Columbus, Ohio --
Re:Pediatric Palliative Care in the Home (by kellykomatz on 06/05/2008)
Shelley

I am currently the consulting pediatrician for a pediatric hospice and palliative care program in Florida. I would be very happy to discuss our program in detail with you and also have you speak to our program manager re: same.
You can either send your questions directly to my email with your phone number and try to talk re: same. Kelly
kkomatz@communityhospice.com
Re:Pediatric Palliative Care in the Home (by ehargus on 06/05/2008)
Building a program is one thing and certainly the administrative and organizational aspects are very important. The actual delivery of care at the bedside remains the most important consideration. I am a pediatrician/pain management specialist/peds cardiologist and have taken care of kids in their homes as a hospice consultant. When the child/family can no longer get to the tertiary care facility, it is absolutely essential that he/she be visited by personel that are very familiar/experienced with dealing with children with terminal illness. I have found home visits by myself on a frequent basis for these children absolutely essential---families want to see a doctor at home and I believe that every effort should be made to find a local pediatrician who is willing to become the visiting hospice physician for these patients.
+ Re:Pediatric Palliative Care in the Home (by sfriebert on 06/10/2008)
Hi Shelley, I don't know what state you are in -- sometimes state regs can affect what would be the best choice. For pediatrics, the issues are very different, as was pointed out -- but to your specific question, you could look at where most of your referrals are landing, how best to preserve continuity and trust (and it sounds like you have a plan to do that with the same team) and, obviously, reimbursement issues. Many programs opt to house pediatrics within home care to offer the full continuum, and cross-train the pediatric team in hospice care. Others use more broad entry criteria for their hospice programs when it comes to pediatrics. Is your organization looking to revise its current reporting structure at all?
Re:Pediatric Palliative Care in the Home (by susanfolk on 03/21/2010)
We have a home care team/peds team/and hospice team under the same roof. Our Pediatric home care, palliative care, hospice is all under the Pediatric Team (so the same staff follows that kiddo regardless of which program he/she is under). We pull in the Chaplain from the adult program (we are a very small agency, ADC of peds is 30-50 including all of the above categories). We see the vast majority of kids under the palliative care vs hospice benefit as it allows for greater reimbursement and options for treatment for the families. There have been a few who opted for pure hospice and we did manage all of their needs under that benefit. I'm in the process of a research project and when I get to making the tables for cost/expenditures for these kids, I"ll let you know....

Best wishes,
Susan
Re:Pediatric Palliative Care in the Home (by Vin_Gupta on 08/12/2010)
Hi all,

We are looking to better define a protocol for home extubation in pediatrics. Are there any protocols/guidelines already out there that we could use as a frame work to build ours around? Would anyone be willing to share their own protocols/guidelines? thanks.

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