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The group began with head and neck cancer, treatment of which turned out to involve 160 processes requiring measurement. To assess outcomes, it asked patients w

by patio11 11y ago

The group began with head and neck cancer, treatment of which turned out to involve 160 processes requiring measurement. To assess outcomes, it asked patients which they thought were most important. Head and neck cancer patients wanted to be able to talk and to swallow. (Survival, which many doctors had thought was a top priority, was not something patients raised; many assumed they would survive.) That parenthetical note is perhaps the clearest illustration I've ever seen in my life on the communication and expectation gap between experts and non-experts.

deleted 11y ago
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existencebox 11y ago
I was looking in the article for a followup to that statement, but there was none. The reason I raise an eyebrow is simply that even in the absence of a communication gap, talking+swallowing as top concerns seems like a reasonable response. What matters more to you, being alive, or having a tolerable quality of life? Are we sure that there's a misunderstanding that death is a likely outcome (I could believe it; but I would also be slightly surprised, since "cancer==death sooner or later" exists even as a trope in mainstream media) as opposed to just a prioritization over things that matter so long as you're alive? Anyway, this was quite a tangent from the original article content, just something I was mulling over given your comment.
- masklinn 11y ago
  > Are we sure that there's a misunderstanding that death is a likely outcome There isn't a misunderstanding that death is a likely outcome, there commonly is a misunderstanding of survival time. Gawande's book covers the subject of differing expectation between doctors and patients when discussing harsh treatment, patients think it'll give them months or years, doctors think weeks. If that isn't explicitly put on the table — and it usually isn't — you can get drawn-out "medical fights" where the patient's quality of life is more or less negative. See also: http://www.pbs.org/wgbh/pages/frontline/health-science-technology/being-mortal/dr-atul-gawande-hope-is-not-a-plan-when-doctors-patients-talk-death/ http://www.pbs.org/wgbh/pages/frontline/health-science-techn...
masklinn 11y ago
Atul Gawande's "Being Mortal" has a chapter or two on expectation gap, the realisation of how large it was made my stomach drop. And do so once more when Gawande described how the expectation gap still existed when doctors become patient (both he and his father are doctors, after his father fell with cancer he first succumbed to the expectation gap as he was preparing a book on the subject). It's a great, eye-opening book. edit: http://www.pbs.org/wgbh/pages/frontline/health-science-technology/being-mortal/dr-atul-gawande-hope-is-not-a-plan-when-doctors-patients-talk-death/ http://www.pbs.org/wgbh/pages/frontline/health-science-techn... covers some of it
gozo 11y ago
In my experience that is to some extent a logical assumption though. Most doctors will "fix" you to the best of their ability, it's the life quality issues you really have to fight for.
mzs 11y ago
It is why my wife did not choose the first two surgeons. For her being able to smile was most important. Then to see was the second. For both of those she wanted to have into old age. Losing hearing and balance immediately were of no concern. She just assumed a total resection and good recovery.
stevedt 11y ago
I was in the ER with what I expected was (and turned out to be kidney stones). I was stunned when the doctor's first question was something like "what is your expected outcome of this visit?". I mumbled something like "make the pain go away and not come back".

by patio11 11y ago

deleted 11y ago

[deleted]

existencebox 11y ago

I was looking in the article for a followup to that statement, but there was none. The reason I raise an eyebrow is simply that even in the absence of a communication gap, talking+swallowing as top concerns seems like a reasonable response. What matters more to you, being alive, or having a tolerable quality of life? Are we sure that there's a misunderstanding that death is a likely outcome (I could believe it; but I would also be slightly surprised, since "cancer==death sooner or later" exists even as a trope in mainstream media) as opposed to just a prioritization over things that matter so long as you're alive? Anyway, this was quite a tangent from the original article content, just something I was mulling over given your comment.

masklinn 11y ago
> Are we sure that there's a misunderstanding that death is a likely outcome There isn't a misunderstanding that death is a likely outcome, there commonly is a misunderstanding of survival time. Gawande's book covers the subject of differing expectation between doctors and patients when discussing harsh treatment, patients think it'll give them months or years, doctors think weeks. If that isn't explicitly put on the table — and it usually isn't — you can get drawn-out "medical fights" where the patient's quality of life is more or less negative. See also: http://www.pbs.org/wgbh/pages/frontline/health-science-technology/being-mortal/dr-atul-gawande-hope-is-not-a-plan-when-doctors-patients-talk-death/ http://www.pbs.org/wgbh/pages/frontline/health-science-techn...

masklinn 11y ago

Atul Gawande's "Being Mortal" has a chapter or two on expectation gap, the realisation of how large it was made my stomach drop. And do so once more when Gawande described how the expectation gap still existed when doctors become patient (both he and his father are doctors, after his father fell with cancer he first succumbed to the expectation gap as he was preparing a book on the subject). It's a great, eye-opening book. edit: http://www.pbs.org/wgbh/pages/frontline/health-science-technology/being-mortal/dr-atul-gawande-hope-is-not-a-plan-when-doctors-patients-talk-death/ http://www.pbs.org/wgbh/pages/frontline/health-science-techn... covers some of it

gozo 11y ago

In my experience that is to some extent a logical assumption though. Most doctors will "fix" you to the best of their ability, it's the life quality issues you really have to fight for.

mzs 11y ago

It is why my wife did not choose the first two surgeons. For her being able to smile was most important. Then to see was the second. For both of those she wanted to have into old age. Losing hearing and balance immediately were of no concern. She just assumed a total resection and good recovery.

stevedt 11y ago

I was in the ER with what I expected was (and turned out to be kidney stones). I was stunned when the doctor's first question was something like "what is your expected outcome of this visit?". I mumbled something like "make the pain go away and not come back".