ESPEN Congress Vienna Nutrition after discharge from hospital From patient to person - artificial nutrition at home C. Jonkers (Netherlands)

Transcription

1 ESPEN Congress Vienna 2009 From patient to person - artificial nutrition at home C. Jonkers (Netherlands)

2 Transfer Patient to Person! Cora Jonkers Academic Medical Center Amsterdam NL

3 Critical illness Trauma/Infection Acute Stress Response Iatrogenic Factors Immunological Response Neuroendocrine Response Metabolic Response

4 Anthony Patient Anthony 2004 Mesenteric thrombosis and resection of bowel and left colon, high output stoma & start Home Parenteral Nutrition 2005 close stoma 2005 infection and change PAC 2006 fistulae bowel treated 2009 Person Anthony still on home PN

5 A DVD instructing patients to work with TPN at home Home TPN, in motion

6 Special thanks to Fresenius Kabi the Netherlands to make the subtitles possible!

7 Adults UMCN Adults AMC Children AMC The Netherlands 16 Million inhabitants 2 centers ±200 patients on Home PN

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9 I definitely had problems with it, especially at first.

10 Basic nutrition support team Experts with empathy Continuation of care Specialized ward for training Support other care takers Good logistics (Nutrition and resources)

11 Points of interest during training discus future: fear of duration of life, infections, complications Restrictions in normal life, being depended on TPN, having a stoma

12 I was a lot more critical about it, than those around me. They said: You're still here...and if that's what it takes to keep you alive... why worry? You're still here, right?

13 Home parenteral nutrition program AMC Application of patient by physician to HPNteam Evaluation patient (visit) Duration of dependence on TPN Social situation (home, caretakers) Independency Training on GE ward Discharge Out patient clinic evaluation 24 hrs back service

14 Safe clinical nutrition at home Prevent infections Prevent clogging of lines Prevent from side effects therapy Osteoporosis Liver Deficiencies Possibility for Bowel transplantation Contact with transplant center Make patient independent!

15 Paediatric TPN at home

16 When discharge? Patient / caretaker is totally trained Patient is self confident about going home Patient is medically ready Nutrition and resources (pump, lines etc.) are delivered at home Appointment for follow up visit to outpatient clinic

17 Different goals HOSPITAL Acute situation Avoid side effects Hyperglycemia Electrolytes imbalance 24 hr connected to TPN Optimal nutrition Nurses connect nutrition HOME Recovery Evaluation of therapy TPN at night Back to normal life Focus on future QOL (oral nutrition) TPN connected by patient him/her self

18 I saw it differently, because I couldn't do what I wanted I needed help to shower, and to climb the stairs. My wife and kids ate a meal and I recognized the smell... I really hated that.

19 Quality of life and HPN Psychological problems depression, anxiety Social life disturbed due to: venous access device, the time schedule for HPN administration, the inability to have normal oral intake, gastrointestinal mobility problems, physical complaints. somatic problems fatigue, diarrhea, pain, polyuria during infusion and sleep disruption. overall QoL similar to healthy populations. Huisman-de Waal G 2007 Baxter, J 2006

20 Recommendations (1) Provide safety 24 hr back up service without delay Training in-hospital Social worker contact during training Frequent evaluation through experienced team in out-patient clinic Good co-operation with home physician and home pharmacy

21 Recommendations (2) Quality of life Signalize (psycho)social problems on early basis Discuss treatment with patients Support patient society

22 So I've resumed my old familiar life again Luckily, because it's very important. You can't do it all on your own. I thought you could, but you can't.. You need help, even though you don't want it. Plus you get used to it after a while I hadn't expected it either, but it's true.

23 AMC nutrition support team