Pallative Care for Joy?

Carla Marie · #1 12-04-2009, 06:21 PM

Does anyone have this? The doc was asking us about this~ do they talk to ALL families about this with a child with special needs or is it bcuz of her lung condition?

MomofTwoBoys · #2 12-04-2009, 06:43 PM

We were involved with pallative care dept. while in Akron Children's... they do a lot with kids that have terminal and/or chronic conditions... They (in our experience) were absolutely WONDERFUL!!! They still call at least once a month just to check on him, if anyone had donated something for chronically ill children they always call to offer it to us, they attend (their social workers) our vent clinics, and are always "on call" if we need help organizing his care/ appts.

JWorthington · #3 12-05-2009, 04:21 AM

We were offered this for Sam around 4 years ago, but we decided against it as the thought was just too distressing for us at that time. Sam also has chronic lung disease and was pretty high maintenance back then. I don't think it is offered to everyone.

alizesmom · #4 12-05-2009, 07:09 AM

We had palliative care for Alize when we knew he was terminal. Their services are great and they offer much needed support. I can't answer if they are offered for other reasons.

Karen

againes304 · #5 12-05-2009, 04:09 PM

We have pallative care! At first it scared me because I thought the word pallative was associated with terminal. But It is also to help with chronic diseases as well! JJ has chronic lung disease. It has been great! If I ever need anything that the DME can't get me I just call them and they mail it out! We needed a neosucker to suction JJ's runny nose that he constantly keeps, the DME had no clue. I called our pallative care nurse and she mailed some right out! She did the same with pediatric masks that we requested they are great at our hospital! Would be worth it to give them a chance! they offer alot of help and feedback! Always see familiar faces when there is a admitt into the hospital.

Ann · #6 12-05-2009, 04:52 PM

I get referrals to the Willow Tree Foundation from hospice here in Arizona for parents of children with chronic/life threatening illnesses. I never knew there was such a division of hospice prior to the connection with my Foundation. Based on what Amy said, it sounds like it's a great benefit and probably something I should look into for Jack.

againes304 · #7 12-05-2009, 05:26 PM

It is nice if or when you go into the picu you can let them know that you all are apart of the pallative care program, at that time they call them in and there are some familiar faces that are up to speed with the history of the patient. Also the picu has several different DR's, most know nothing about your child! The pallative care prgram usually has 2 Dr's at the least, and nurses. They will help you in the journey through the visit. Anything we have ever needed they have been great and very helpful!

Ainsley's Mom · #8 12-05-2009, 08:06 PM

The palliative care social worker coordinated a round table discharge meeting between all the specialties when Ainsley was at Children's. At the time I had no idea what palliative care was. Here's the Wikipedia def:

Quote:

Palliative care (from Latin palliare, to cloak) is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than striving to halt, delay, or reverse progression of the disease itself or provide a cure. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness. Non-hospice palliative care is not dependent on prognosis and is offered in conjunction with curative and all other appropriate forms of medical treatment.

In the United States a distinction is made between general palliative care and hospice care, which delivers palliative care to those at the end of life; the two aspects of care share a similar philosophy but differ in their payment systems and location of services. Elsewhere, for example in the UK, this distinction is not operative: in addition to specialized hospices, non-hospice-based palliative care teams provide care to those with life-limiting illness at any stage of disease.

We've run into him in the halls at the hospital but that's been it for our experience.

TaraB · #9 12-05-2009, 08:28 PM

At our home hospital here, we have a pallative care doctor. He is awesome! He gives us lots of information on resources available to us. In Iowa City, we have a Continuity of Care nurse that does pretty much the same thing--coordinates appointments, information on resources and agencies, making sure we have what we need before appointments. Both are great!

kshell · #10 12-05-2009, 08:49 PM

I am a hospice social worker (for adults). We also do palliative care. Basically we do comfort care and supportive care to patients who have a disease process that they will never "recover from" and is chronic. Many times these patients are also receiving other treatments that are may be considered "aggressive". Not sure if this helps at all, again, this is in the adult arena. It is a wonderful program for those involved.