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  1. Random Permastudent
    Random Permastudent August 24, 2008 at 1:20 am |

    Why is it those who do not have the condition are considered the experts on how it should be viewed? Sure, I can accept the fact that doctors are experts on how to treat diseases like cancer

    If you can’t view a disease you can’t treat it — which means that if you can treat it, you’re viewing it properly. I think the term is “contrapositive.”

    Should we call whatever might kill us (e.g. diabetes, pneumonia) “terminal”?

    Look at a death certificate and ask yourself why it has three lines for cause of death. When physicians use the words mortality and terminal, we’re using it in a very specific, technical sense that resolves the problems you raise.

    Why are the lives of people with cancers like the ones Elizabeth Edwards and I have described as terminal when others are not even though they may all result in death eventually.

    They’re considered terminal because it’s above the threshold for the percent of patients who die within a fairly short, specified period of time — usually five years — and is the ultimate underlying cause of death. (But the reason why cancer’s a bit different from the five years is because the apparent improvement in cancer mortality is ultimately due to a statistical artifact. Once you account for lead time bias caused by increased screening and politically-motivated administrative changes in medical definitions, most cancer patients don’t pass the five year threshold.)

  2. Rachel
    Rachel August 24, 2008 at 1:44 am |

    Why is it those who do not have the condition are considered the experts on how it should be viewed? Sure, I can accept the fact that doctors are experts on how to treat diseases like cancer. However, does that make them qualified to determine how diseases should be viewed? I’m not so sure about that. Instead, I wish people would consider the fact that PWD are perfectly capable of deciding how they should view what’s going on with their body. It’s more than a little bit paternalistic to try to make that decision for us.

    this is so so so important, and such a big part of why I’m glad you accepted the offer to guest-blog here – it’s wonderful to have the voice of a PWD on this issue.

    My background on this issue was as an attorney with a national disability rights non-profit, and we did a great deal of opposition activism to the the California law. Another problem with the inclusion of the six-month time frame in the OR and (proposed) CA laws is that doctors are routinely incorrect about prognoses, and even about diagnoses.

    anyway – thanks again for posting this.

    also ps – your last line – “In an ablist system, what’s normal will almost always be defined as that which meets up with non-disabled people’s lives.” – is so right-on.

  3. Jamie B.
    Jamie B. August 24, 2008 at 5:51 am |

    I think this is a very important, interesting, and insanely complex topic. It ties into our cultural fear of death, desire for control, obsession with youth, in addition to everything you have already written about so beautifully.

    I don’t have much to say, here, as this is something I struggle with, both simply in contemplating morality and through my confrontations with my abled privilege. But thank you, for providing some excellent food for thought.

  4. jgoreham
    jgoreham August 24, 2008 at 10:34 am |

    “The truth is, there’s a whole lot of room between incurable and terminal and that gap is only widening as I’ve experienced first hand.”

    So true- my cousin has cystic fibrosis. When she was born, my aunt was told that cousin would live to be 5, maybe. Then, technology and treatment options started to change- when she was 5, we were looking at 12. When she was 12, she’d definately live to get through high school. My cousin is now older than 30, in the past, somebody with CF never would have accomplished that. I would never tell somebody that my cousins condition is ‘terminal’, I would call it ‘incurable’.

  5. Ampersand
    Ampersand August 24, 2008 at 1:52 pm |

    However, does that make them qualified to determine how diseases should be viewed? I’m not so sure about that. Instead, I wish people would consider the fact that PWD are perfectly capable of deciding how they should view what’s going on with their body. It’s more than a little bit paternalistic to try to make that decision for us.

    I definitely agree that no one should have the gall to tell (for example) Elizabeth Edwards that the way she’s viewing her disease and her body is wrong. But it’s a bit murkier, for me, when it comes to more general statements of how disease should be understood in society.

    For one thing, someone who is not visibly or self-identified as a PWD could still be a PWD. There are many reasons some PWDs don’t want to disclose their diseases publicly.

  6. sophonisba
    sophonisba August 24, 2008 at 3:23 pm |

    For one thing, someone who is not visibly or self-identified as a PWD could still be a PWD.

    If you are saying that certain objective facts about the way a person’s body or brain functions are sufficient to define them as PsWD with or without their say-so or self-identification, okay. That makes some sense to me. But it is no different from saying that certain objective medical facts about someone’s illness are sufficient to have it reasonably described as terminal, whether they like that word or not.

    So I don’t see how you can make that assertion but still want to agree with bint.

  7. River
    River August 24, 2008 at 6:44 pm |

    “does your ability to afford proper treatment determine whether or not one should be considered “terminally ill”?”

    And: “Because so much of medicine is focused on curing people, when a patient has conditions that can’t be wiped out, it’s often viewed as a failure.”

    I don’t have cancer; I have ESRD (kidney failure). For now, I can afford treatment for this in the form of dialysis. However, there is a lifetime maximum cap on our group health insurance of two million dollars. Once that is reached, I will no longer be able to afford dialysis, even with Medicare coverage (which almost everybody with ESRD in the U.S. qualifies for), because we will be on the hook for 20% of everything. It adds up quickly. ESRD cannot be cured; it can only be treated. Even transplantation is a treatment and not a cure. (And if I get one, I’ll still eventually max out our insurance, and then I won’t be able to afford the anti-rejection drugs which cost over $20,000 a year, and will lose the kidney.)

    So I’m getting reconciled to my decision that I’m not going to bankrupt our family with my medical costs. I’ll go on hospice when I max out the insurance and that will be the end of that fairly quickly.

    At what point does my condition become terminal, or does it? My natural lifespan is being artificially extended by means of dialysis; it’s the only thing keeping me alive.

    So yeah, I’d say one’s ability to afford treatment does determine whether one is terminally ill or not.

  8. OncMD
    OncMD August 25, 2008 at 12:12 am |

    The ACS cancer statistics are only recorded for those who are receiving treatment, not for those cases that are never discovered until death or those patients who decide not to get treated after diagnosis.

  9. Ampersand
    Ampersand August 25, 2008 at 12:18 am |

    For one thing, someone who is not visibly or self-identified as a PWD could still be a PWD.

    If you are saying that certain objective facts about the way a person’s body or brain functions are sufficient to define them as PsWD with or without their say-so or self-identification, okay. That makes some sense to me. But it is no different from saying that certain objective medical facts about someone’s illness are sufficient to have it reasonably described as terminal, whether they like that word or not.

    I think I was unclear. I was trying to describe the example of someone who has a disease, and thinks of themselves as a PWD, but doesn’t choose to share that fact with others (for instance, in an online forum like this one).

  10. OncMD
    OncMD August 25, 2008 at 12:31 am |

    At what point does my condition become terminal, or does it? My natural lifespan is being artificially extended by means of dialysis; it’s the only thing keeping me alive.

    Unfortunately, dialysis is a poor substitute for real kidney function, most nephrologists estimate that its only about 10% as effective as a functioning kidney.

    People who start dialysis have an average lifespan of only 10-15 years before the ESRD-related complications overwhelm them. Defining ESRD as “terminal” is somewhat tricky because 10 years is sometimes long enough for other diseases to kill the patient that arent related to ESRD. However I will say that in the patients I’ve treated with ESRD that I’ve followed over a long period of time (10+ years), the vast majority (prob 75% or so) died of ESRD-related complications despite the fact that they were receiving an appropriate regimen of dialysis.

    However, for Edwards cancer, the scenario is completely different. With her stage IV and several mets, the odds are overwhelmingly against her being with us longer than 5 years. Is it possible, sure. But extremely unlikely.

    I would never diagnose a patient as “terminal” without further explanation. But you guys gotta understand that you are not necessarily representative of the patient sample at large when diagnosed with these kinds of conditions. I’m sure most or all of you would want to have a detailed conversation about the statistics of mortality, but there’s a LOT of patients out there that want nothing to do with that–they just want my gut impression about their prognosis without spending a lot of time talking about Kaplan-Meier curves.

    With a new stage IV cancer diagnosis, I always ask them up front how much they want to know. I’d say its split about 50/50 between those who want to know every statistical detail of their prognositc profile and those who want me to “break it down” for them in one or two sentences. In the latter case, I just say that its very likely that they will pass away within the next 5 years, although I cant say with 100% certainty.

    Statistics are not destiny but to throw up your hands and say “you could be dead or alive in 5 years, we have no idea what will happen” is not good medicine. Its just as much of a disservice to say that to patients as it is to have a 2 minute talk that consists of “you are terminal, and hopelessly going to die” before walking out of the room.

  11. Danakitty
    Danakitty August 27, 2008 at 11:05 am |

    I don’t know much about Edwards’ cancer, but my mother had leukemia when I was in high school. This September she’ll reach the 5 year mark. Her disease could have been terminal if the cancer spread faster than we could catch it. In fact, if she had just had chemo, chances are it would have been terminal. She had to have a bone marrow transplant.

    From my understanding, she is not “cured,” she is in remission with a high chance of the cancer not returning. So to me, her disease was potentially terminal and certainly incurable, yet neither of those terms mean she shouldn’t have received the care she needed, or the medication she still takes to regain her strength. Every year we come up with more treatments and cures for diseases or conditions we thought were “incurable,” “terminal” or both. There’s never a good reason to deny care based on someone’s percentage chance of survival. Give someone another two years, another 10 years, and there’s always a possibility that we’ll have created a new opportunity for survival.

    People are always going to be searching for a cure… that’s natural. Who wouldn’t want there to be some magical cure-all that erased all disabilities? But you’re right, we do have to start accepting that for some diseases or disabilities, there are no cures, just treatments, and that’s not a death sentence!

  12. abfh
    abfh August 29, 2008 at 1:17 am |

    Danakitty wrote:

    Who wouldn’t want there to be some magical cure-all that erased all disabilities?

    Well, me, for one. I belong to a multigenerational autistic family. In recent years, society has decided to categorize our particular traits as a disability. To be clear, I am not arguing that autism is or is not a disability; like anything else, it can be, depending on the circumstances. However, I find it very chilling that we live in a society where, as soon as any group gets a disability label, large numbers of their fellow citizens immediately feel that there’s some sort of moral imperative to “erase” their differences, regardless of their own views and preferences.

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