Today we had an interesting case of a post BMT patient who is refusing the lipid bag because of its white color!
The patient had some kind of bad experience with TPN in another hospital before she did her BMT that made her refusing any kind of TPN. After counseling her, she accepted to receive her TPN with one condition, which is not to be of white color, otherwise she would disconnect it and put it in the trash bin -according to her-!
The patient has gone through several weeks of poor oral intake, and having lipids at least twice weekly is very essential.
The suggestions we received were things like:
Making 3-in-1 TPN
Wrapping the lipid bag (and the tubing) with a cover of different color
1. 3-in-1 might not be the best solution since the final product looks white in colour.
2. Wrapping the IV lipid is the best solution. Try to change the container of lipid i.e. from current to plastic minibag or syringe (wrapped with the tubing).
3. If the patient is absolutely refusing lipid, then encourage enteral/oral feeding (on top of PN-free lipid) assuming the patient does not have severe mucositis. As I do remember for the old days, studies have shown that Enteral feeding in paediatric BMT patients with mild to moderate mucositis is superior and safer than PN.
I would never give lipids to this patient in their vein in any way until I understand what happened? Why? What gaps, if any, exist between this and patients understanding of the whole experience they had with the white thing they received?
After that I would resolve their problem with experience, knowledge, compassion, and love and make sure they agree or consent to the new plan. I would also communicate this clearly and effectively with other providers and in my health system where this information would be confidentially shared and necessary. I would then present this story and all similar ones to people and show them what works and what does NOT work.
That is what a caring pharmacist in these cases would really do. Or at the very least what I personally would do.
You know every day my little 3.5 yr old want to eat their way, sometimes it can be really risky as you know they want to play more than they want to grow their bodies and organs. Yet, I would invest in all good means to have them on board with their nutritional plans. In the very rare case where you have to cross the boundaries of their autonomy I still do not support hiding what they hate in my enterprises. It is unethical.