By David Seres on behalf of A.S.P.E.N.’s International Clinical Ethics Section
The following was inspired by a case on which I was consulted. While the details have been significantly changed for the sake of both stimulating a discussion and disguising the patient, the primary ethical dilemmas and the solution we reached (which will be revealed in a subsequent post), remain unchanged.
A consultation is requested of the nutrition support service for TPN for a 42-year-old woman. She has been battling metastatic cancer of the biliary tract for four years. So far she has been winning this battle; her initial prognosis was only three to six months. She has undergone several major surgeries and, in addition to aggressive standard of care chemotherapy, several courses of investigational and complementary medical therapies. Now she is severely cachectic and unable to eat, with symptoms suggestive of gastric emptying delay. She has ascites, very low muscle mass and albumin, and pneumonia, but is not septic. She has a moderate coagulopathy and has been having nose bleeds. She has a functioning dual lumen infusion port. Everyone agrees her remaining life expectancy is measured in days to weeks.
The patient is self-made. She built and ran a large company that started out of her garage while she raised two children alone. She is now extremely wealthy and has used her money in generous and socially responsible ways. The patient is someone used to having her way and having control over her life and her “staff”, which you are now part of, with the snap of her fingers. She is a very large donor to your hospital and frequently socializes with members of the C-Suite and Board of Trustees. Most recently she had started to discuss the possibility of a large legacy donation to endow a cancer research program.
She knows she has cancer, makes no bones about that, but is absolutely unwilling to discuss prognosis, especially if it is bad news. In fact, her boyfriend and sister, whom the patient has instructed everyone to heed, meet everyone beforehand with strict instructions not to mention death, palliative care, DNR, or even possible complications. They produce a document signed by the patient confirming this. She only wants to discuss things that will extend her life, which is her primary goal regardless of cost or discomfort. The patient asks every consultant whether they have read and understand the document before being allowed to start a consultation.
The Nutrition Support Team evaluates the patient and deems the appropriate intervention to be a discussion of the futility of nutrition support. This is a patient for whom artificial nourishment, either enteral or parenteral, is unlikely to meet her stated goals of prolonging her life. In fact, it is more likely that either, but especially parenteral, will shorten it. They feel strongly that they do not want to do something that is so contrary to her stated goals of care.
You enter the case as an ethics consultant after receiving a call from Patient Services. They have received complaints from the family about the insistence of the team that they allow discussion of prognosis. They further complained that the “intransigent and irrational” Nutrition Support Team is refusing her request for feeding. You attempt to discuss this with the patient’s boyfriend and sister. They tell you that anything that even symbolizes futility is horribly distressing to the patient. Her greatest discomfort currently, over and above any symptom or physical pain, is the emotional distress she is feeling about not being fed. She is obsessed with this, talks about it constantly, cries about it, and begs for TPN.
Questions for discussion:
1) What would you do to resolve the situation?
2) What ethical principles are in conflict?
3) What are the nonethical confounders to finding a solution?
4) How can a compromise be found?
5) What compromise can you suggest?
6) What, if anything, could have been done to prevent this ethical dilemma?
Lend your voice to the discussion by leaving a comment below. Do you have a clinical case study involving ethics that you’d like to see explored in Food for Thought? Email Jennifer Kuhn to make suggestions for future topics.