The ‘problem list’ was initially proposed in the 1960’s as a means to organize patient medical information. Since that time, it has become an integral part of provider notes because it succinctly outlines the patient’s health issues and treatment plans. So all providers reading the record can quickly understand what the main issues are for that patient. In the days of disorganized paper records, this was extremely helpful; and even in today’s digital age, the ‘problem list’ continues to be an integral part of the electronic medical record.
However- of course there is a however that’s the purpose of this blog…. Although the problem list is an effective communication tool within the confines of the written record it is not a useful tool to guide actual conversations between providers and patients/families. Miscommunication and misunderstanding can arise when providers discuss each problem and its treatment in isolation, without looking at the big picture- i.e., the whole patient.
patients are more than the sum of their ‘problems’
two patients, both with the same ‘problem’: difficulty with oral intake.
Mrs J, 65 years old, is 10 days following complicated intra-abdominal surgery for localized pancreatic cancer. Her postoperative course has been a bit rocky. Due to a pancreatic leak and subsequent intraabdominal infection (both of which are expected to resolve) she is facing a prolonged period of being NPO (unable to take nutrition by mouth). A discussion about placing a feeding tube or central line to allow artificial nutrition/hydration needs to occur.
Mr M, also 65 years old, is in the hospital for recurrent aspiration pneumonia. He is quite frail and has multiple ‘problems’ including chronic kidney disease, hypertension, and heart disease. In addition, he has advanced dementia. A swallow evaluation showed that he aspirates food/liquids into his respiratory tract upon eating and drinking. He is now deemed unsafe for oral feeding.
For both of these patients, a discussion about providing nutritional support by artificial means is needed.
framing the conversation
On the surface Mrs J and Mr M share a common ‘problem’: both are unable to take adequate nutrition by mouth. Providing nutritional support by artificial means- i.e., either by the veins or via a tube in the gastrointestinal tract seems obvious. But these patients have two very different underlying driving diagnoses and expected disease trajectories; and this must be kept in mind during discussion about treatment.
Mrs J’s driving diagnosis is a localized pancreatic cancer, and she has had a potentially curative operative procedure. The postoperative complications while problematic, were not unexpected, and are expected to resolve completely. Her need for artificial nutrition is short-term, providing a necessary bridge to ultimate complete recovery.
Mr M has a completely different picture. His driving diagnosis is not the recurring pneumonia, nor the difficulty with oral intake. It’s end stage dementia (which ironically was listed as last on his problem list). Artificial nutrition for this patient is not a short-term fix because his problem is permanent and progressive. Sadly, the provision of artificial nutrition will do nothing to change his underlying disease trajectory.
the danger of “what do you usually do?” questions
Providers must avoid falling into a common trap, embodied by the “what do you usually do?” question. When looking at the problem in isolation, the answer to “what do you usually do for someone who can’t take adequate nutrition by mouth” is obviously “provide artificial nutrition by either a feeding tube or intravenous feedings”.
But for these 2 patients, the conversations must be very different.
The conversation with Mrs J is straight forward as the need for nutritional support is expected to be short term, and a bridge to recovery and eventual normal oral intake.
The conversation with Mr M’s family needs to be very different. The question must be reframed, so it is about what to do for someone with advanced dementia who has gotten to the point where they can no longer safely take adequate nutrition by mouth. This is a more complicated discussion. Both the geriatrics and palliative medicine communities do not recommend feeding tubes/artificial means of nutrition in patients with advanced dementia because the burdens of treatment (agitation, increased incidence of pressure sores, aspiration pneumonia to name a few) far outweigh the benefits. This needs to be clearly communicated. Mr M’s family should be encouraged to help him take food and drink in small amounts, ad lib, and assure them that their loved one will not suffer or ‘starve to death’ because he’s not eating enough. Explain that as his dementia advances, his body requires fewer and fewer calories, so he’s not hungry. As his illness progresses, he will gradually get weaker and (hopefully) die peacefully. As you can see, this is a bit more complex of a discussion than typically occurs.
Conversations need to center on the current issue as it relates to the big picture. Unnecessary conflict and frustration can arise when the ‘problem’ is potentially treatable, but the patient’s overall condition is more complex. I’ve seen many patients like Mr M in my palliative medicine practice- and the referral usually says something along the lines of: ‘patient with advanced disease, despite my recs against a feeding tube, family still wants everything’.
But typically, after discussing the true utility of artificial nutrition within the context of a patient with advanced dementia, (or whatever advanced disease process the patient has) almost without exception the family says no one ever discussed it in this fashion. Unless the patient is complaining that they are hungry (which is not typical) the lack of oral intake is more a problem for the family, than the patient. Families rationalize that it’s the lack of eating and drinking that is causing the patient to decline, not the advancing disease.
Without proper communication, providers often feel the patient/family ‘just doesn’t get it’ and leaves them feeling they are providing treatment of questionable utility. The reality is that the provider hasn’t framed the situation in a way that allows the big picture to be truly understood. It is critical to consistently keep driving home what the underlying driving diagnosis is- even if that seems harsh.
Because remember- you are also wrestling with ‘hope’– that despite the worsening of the underlying condition, with just a bit more food, with improved overall nutrition, their loved one will get stronger and live longer.
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