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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


Anonymous said…
Please, please let patients know that their illness is terminal -- even if your definition is sub-optimal, or that one can live with a "terminal" illness for years.

It is hard enough as an emergency physician already having to tell huge numbers of patients and/or family members that they or their loved one are near death, or critically ill. and get a surprised, shocked look on their faces, revealing that they were either never told that grandma was eventually going to die of her widely metastatic lung cancer or are in such deep denial that they don't recall the oncologist telling them that the chemo was palliative, not curative.

Having to tell them that, and then have a goals of care discussion in rapid sequence (because that's never been discussed, either) is incredibly challenging and taxing and not really fantastic in the ED. Having even more patients that don't know their illness is terminal would only complicate this further.
Anonymous said…
It depends. My mother didn't realize she was until hospice showed up. If we had discussed she would have been really upset. For her it was best if she figured it out for herself. Everytime we talked about advanced directives she would get upset. She got them all done but it was a horrible chore.
Anonymous said…
I believe we should let patient's be in control both on the amount and the details of the information they wish to receive (or not receive) and when. Everyone is on a different journey and reaches (if ever) different stages at different times. If someone tells me not to tell them what lies ahead, I try and understand why and to fully understand them and explain benefits (i.e. an informed refusal). Trying to force my agenda (they need to know they are terminal and/or how much time they have left because research shows 90% of people would want to know) is not person-centered.
Jennifer Brokaw said…
Of course patients have the right to know! The reason information is withheld is that clinicians are still not skilled at delivering hard news. How the news is delivered should be tailored to each individual, but the information does need to be delivered. For instance questions like: "what is keeping you up at night when you think about this illness and the future?" can lead to a lot of information about their wishes. Similarly, the "I hope/I worry" statement by the doctor is a really useful tool to align with the patient's hopes but gently inform them of what may be coming. These conversations take TIME and SKILL. The medical profession MUST commit to taking the time and acquiring the skills. With the exception of Palliative Care doctors and Geriatricians, most doctors are very unskilled at this. Time to change our ways.
Anonymous said…
I appreciate the link to this issue of the BMJ. I am a physician with some experience in palliative care but still find it challenging.I found the articles to be a good review of the issues surrounding end of life care.
Anonymous said…
Preparation for one's death can add richness to one's life experience and can allow people to complete unfinished business (and help others resolve any issues with the dying person). Without the knowledge that one will die from this illness (most likely), one wastes his/her time running towards the next treatment, the next attempt at cure, and never gets to the important stuff. So sad that this is not recognized by so many many people in our culture.
This is obviously a very controversial topic but in the end I do think people have the right to know. Some people find the news very hard to handle while others plan to make the best of it.
We as a society can't force a mindset on patients but maybe we can nurture patients into making the most of their lives - which is easier said than done. At the end of the day, it's the patients' outlook that matters.

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