Do patients need to know they are terminally ill?

The British Medical Journal (BMJ) has published a couple of interesting pieces this week that might interest you (controversy alert ahead at the end!). Get a copy of this weeks version and read it! (subscription may be needed for links)

First, there is a wonderful piece about an outstanding example of hospital care for patients with dementia by Kate Sartain – a celebration of good care delivery!

Next up, there is a Pair of articles discussing Prognosis Research: A framework for researching clinical outcomes and Stratified medicine research . (I wonder if Eric or Alex know any good bloggers about prognosis who could comment?)

For education of the “competent novice” there is an article on Caring for the dying patient in the hospital that is going into my teaching file (Do people still have those?) along with a thoughtful editorial by Fiona Godlee, the editor of BMJ entitled Helping patients to die well

Do Patients Need to Know They Are Terminally Ill?

Finally, there is a fascinating debate that I am really interested in seeing GeriPal readers participate in on the BMJ site. In the head to head section, two authors face off over the question of do patients need to know they are terminally ill:

• Collis and Sleeman argue Yes.
• Leslie Blackhall tackles some interesting issues in the NO argument. Read it. In short, the argument is that we don’t know what terminal means, and the discussion can set up false choices and the real focus should be on best care. (for example, don’t offer feeding tubes in advanced dementia)

I thought what was missing in the discussion was the question of suffering that comes from not knowing what to expect. I think the fundamentally important question is “What do YOU WANT to know?”

I figured my friend David Oliver, cancer patient, gerontologist and blogger ( and STAR of AAHPM 2013) would have a thought or two. He asked me to share it. Here’s the whole response:

“I can hardly believe that Blackwell would propose that not revealing a prognosis to a terminal patient can be a good thing, and even beneficial. I suppose it may be beneficial and make life easier for the doctor, but certainly not for the patient. As one with Stage IV terminal cancer I can tell you right now that not knowing what is coming, and potentially when, cause far more suffering. I will use chemotherapy as an illustration. In my case, neither the oncologists or the nurse oncologist, in fact, no one told me what to expect in terms of the side effects (only that I might have a bit of nausea), or when to expect them to rear their ugly heads. I was able, after one treatment, to predict not only what was coming, but on what day (there were 21-days between my treatments). If I can do this with almost 100% accuracy for all subsequent days between five more treatments, surely someone on the oncology clinical team (fragmented as it is) can predict as well. I still have major resentments toward not being told what to expect, and in the case of chemotherapy, what to do when the side effects surfaced. Blackwell is simply misinformed and has learned little from patients; having little understanding of what patients need and want — probably because the time is never taken to talk to them about such matters.

I have an equally sore spot for the oncologist not making an immediate consult with a palliative care physician or team at time of the diagnosis. These two specialties should be on the same team; there should be one plan of care developed in consultation between the oncologists and the palliative care providers. Had this happened during the course of my chemotherapy treatments I may not have suffered so much when the side effects appeared. My patient education was reactive, not proactive. Perhaps someday we will figure out how to fuse oncologists, palliative care providers, patients, and patient educators…….not to mention social workers, pharmacists, and other important members who should be on the same team.

Finally, the patient and whomever is identified as the #1 caregiver should be an integral part of the team as well. They experience the full continuum of cancer care, and they are the only ones, if indeed no team discussions occur about the course of ongoing care, then no process improvements in the delivery of care will ever be made. And, most importantly, the patient preference(s) for what kind of care is preferred is an absolute necessity yet is often never asked. Once all the options are explored, it should ultimately be the patient who directs the care. If the Blackwell approach is adopted we will be further away from what needs to happen than we are now.”

by: Paul Tatum with David Oliver