Sunday, February 21, 2010
NEJM has an editorial discussing withholding information from patients. It's a practical, casual discussion of 1) the fact that in real life we withhold information from patients all the time (e.g. don't go into all the details as they can be confusing, overwhelming, or superfluous), and 2) the fact that we decide all the time to withhold certain major pieces information out of a desire to protect the patient emotionally. It's the latter that is the real issue (e.g. not talking with a leukemic patient about their abnormal MCV is not a problem; withholding from them their relapse is), and this is a reasoned discussion of those issues. The last couple months one of my fellows and I have started to use the phrase 'two-thirds of the truth' in discussing at times what we've told patients. Generally we mean by this we've discussed the Big Bit of Information, but made a conscious decision (based on our own 'limbic sense' of what the patient is capable of hearing/taking in/etc. or on the patient's own requests for limited information) not to disclose further details or more information (for the time being, even if it's just a day). For example, telling a patient that the cancer is continuing to grow and that there's no further anti-cancer treatment available, but stopping short of talking specifically about death, or disclosing a time-based prognosis, etc. I'm curious as to how others conceptualize this, including the routine day-to-day decisions about what and when to tell patients and when to stop telling them. Sometimes you can just ask patients if they wish to talk further, do they want to talk now about XY&Z, etc. but sometimes (speaking personally) I conclude at the bedside that now is not the time without any specific verbal instructions from the patient. These decisions to withhold now are different from decisions to always withhold (or at least never offer to discuss) that remaining 'third.' How much time you think the patient has, or how quickly decisions need to be made that are contingent on the patient knowing what's really happening, clearly impact these decisions of course. I should probably not hope there is a more organized approach to this (ie, one that people use to teach palliative fellows) but if anyone has one let us know in the comments.
Related to this (almost uncannily so), JCO has a discussion of honesty, pessimism, and 'hope' in talking with cancer patients. It starts with this scenario, and then unpacks all the issues raised by this:
Dee Jones is 35 years old, married, and the mother of three children, all younger than15 years of age. She had been healthy all of her life before she presented with a 2-week history of abdominal discomfort and anorexia. Evaluation revealed moderate jaundice, an enlarged liver, and abnormal liver function tests. An image of the abdomen showed a pancreatic mass and widespread metastatic disease to the liver. A liver biopsy confirmed a diagnosis of metastatic pancreatic carcinoma. She received first-line chemotherapy for pancreatic cancer and returned 6 weeks later for re-evaluation. She had evidence of disease progression, increasing pain, weight loss, and was bedridden more than 50% of her waking hours.It's an excellent discussion. The one thing they don't mention specifically is the big teaching point related to 'making' the patient and her husband cry. This is a common concern amongst housestaff and oncology fellows and something I am constantly addressing: that someone crying because of something you've told them is not a bad thing. Learning you're dying from your cancer and there aren't any realistic ways to treat the cancer anymore - that's something to cry about, that's a normal, healthy, human response to that information and not anything 'bad' that you the clinician has done. We have to be vigilant that we don't worsen the situation for the patient (by being confusing, by not giving them enough time to process, by ignoring their emotions, etc.) of course. One of the best pieces of wisdom given to me when I was training by my teachers was: You can't shine shit.
A staff oncologist, accompanied by a first-year oncology fellow, visited with the patient. With the patient acknowledging that she wanted to hear prognostic information, the medical oncologist had a heart-to-heart discussion with the patient. The senior oncologist noted that survival is typically measured in weeks. They discussed treatment options ranging from additional chemotherapy to participation in an early-phase clinical trial. They talked about symptom management and hospice care. They agreed that no further cytotoxic chemotherapy would be used. The conversation was difficult for all: the patient and her husband cried and the oncologist was visibly moved.
After leaving the room, the staff oncologist and fellow discussed the consultation. The fellow asked the oncologist why he was so pessimistic when talking with the patient. Why did he say things to make the patient and her husband cry? Shouldn't he have given the patient more hope? Would it not have been better for the patient to hear this dire news in chunks over the course of several clinic visits? After all, the patient was so young she may just beat the odds.
Epstein RM, Korones DN, & Quill TE (2010). Withholding information from patients--when less is more. The New England journal of medicine, 362 (5), 380-1 PMID: 20130252
Schapira, L., Butow, P., Brown, R., & Boyle, F. (2009). Pessimism Is No Poison Journal of Clinical Oncology, 28 (4), 705-707 DOI: 10.1200/JCO.2009.25.0027