Cancer decisions
November 13th 2006 06:45
Some extracts from an article by David Rieff, the son of Susan Sontag, regarding her death.
"Illness as more than metaphor" was published in the New York Times on 4 December, 2005.
For doctors, understanding and figuring out how to respond to an individual patient's perspective - continue to fight for life when chances of survival are slim, or acquiesce and try to make the best of whatever time remains? - can be almost as grave a responsibility as the more scientific challenge of treating disease. ... One common thread in what they told me was that interpreting a patient's wishes is as much art as science. ... As [one doctor] explained it to me: 'The fact is that people are never as educated as the doctor. You have to figure out something about the patient' - by which he meant something that takes both patient and physician beyond the profound, frustrating and often infantilizing asymmetry between the patient's ability to comprehend the choices to be made and the doctor's.
Still, the doctor's task here is not impossible. 'There are risk takers and risk-averse. There are those who say, you know: "I'm 70 years old. If I get another four or five months, that would be fine." Others say, "You do everything you can to save my life." Then it's easy. You can go straight into a discussion of what a patient wants.'
... the ethical challenge, vital for a doctor to recognize and impossible (and ethically undesirable) to deal with formulaically, comes not with the 30 percent of patients [who] know for certain whether they want aggressive treatment or not, but with the 'undecided' 70 percent in the middle. As [the doctor] told me somewhat ruefully, the doctor's power to influence these patients, one way or the other, is virtually complete. 'There are ways to say things,' he said. '"This is your only hope." Or you could say, "Some doctors will say it's your only hope, but it has a 20 times better chance of harming you than helping you." So I'm pretty confident I can persuade people.' ... [Another doctor] at times begins by saying, 'There is a very small chance, but it comes with tremendous cost.'
In these situations, doctors ... see their job as, in effect, parsing the patient's response and trying to determine a treatment plan that is responsive to the patient's wishes but is also not what physicians refer to as 'medically futile' - that is, offering no real chance for cure or remission. That is hard enough. What makes the doctor's decision in such situations even more painful is that 'medically futile' means different things to different physicians.
... During their second meeting, [the doctor] offered her the option of treatment with a drug called 5-azacitidine, which gave many M.D.S. patients some months during which they felt relatively well. But the drug did little to prolong life. My mother replied, with tremendous passion, 'I am not interested in quality of life!'
What [the doctor] knew with the horrified intimacy of long clinical practice, but what my mother could not yet know, was just how agonizing the effects of an unsuccessful stem-cell transplant can be: everything from painful skin rashes to inordinately severe diarrhea to hallucinations and delirium. To me, torture is not too strong or hyperbolic a word. After my mother's declaration, [the doctor] only nodded and began talking about where the best place might be for her to have the stem-cell transplant, going over with her the variations in different medical research centers' approaches to transplantation.
... it seems almost impossible to develop a satisfactory definition of what is and is not medically futile. What is the cutoff? A 10 percent chance of success? Five percent? One percent? When does the 'very small chance' my mother's doctors bought at the 'tremendous cost' in suffering ... become so infinitesimal as to make it no longer worth trying?
I have found no consensus among the oncologists I have spoken with in the aftermath of my mother's death, and I don't believe there is one. There are those who take a strong, consistent stance against not just such treatments but also against the general orientation of American medicine, particularly oncology, toward doing everything possible to save individual patients, no matter how poor their chances. These doctors seem inspired by a public-health model based on better health outcomes for communities rather than individuals, viewing it as the most moral and the only cost-effective way of practicing medicine. This view, often associated with the work of the medical ethicist Daniel Callahan, is increasingly influential.
One reason for this is that the current American medical system is breaking down. Several physicians with little sympathy for Callahan's approach pointed out to me that, like it or not, American society either can't afford or no longer chooses to afford to underwrite the kind of heroic care people like my mother, whose prognoses are obviously poor, still receive in the United States.
The image in this article is licensed under the GNU Free Documentation License. It's from the Wikipedia article Cancer.
"Illness as more than metaphor" was published in the New York Times on 4 December, 2005.
Where the disease got its name from: the first image is an example of cancer in a mastectomy specimen
***
For doctors, understanding and figuring out how to respond to an individual patient's perspective - continue to fight for life when chances of survival are slim, or acquiesce and try to make the best of whatever time remains? - can be almost as grave a responsibility as the more scientific challenge of treating disease. ... One common thread in what they told me was that interpreting a patient's wishes is as much art as science. ... As [one doctor] explained it to me: 'The fact is that people are never as educated as the doctor. You have to figure out something about the patient' - by which he meant something that takes both patient and physician beyond the profound, frustrating and often infantilizing asymmetry between the patient's ability to comprehend the choices to be made and the doctor's.
Still, the doctor's task here is not impossible. 'There are risk takers and risk-averse. There are those who say, you know: "I'm 70 years old. If I get another four or five months, that would be fine." Others say, "You do everything you can to save my life." Then it's easy. You can go straight into a discussion of what a patient wants.'
... the ethical challenge, vital for a doctor to recognize and impossible (and ethically undesirable) to deal with formulaically, comes not with the 30 percent of patients [who] know for certain whether they want aggressive treatment or not, but with the 'undecided' 70 percent in the middle. As [the doctor] told me somewhat ruefully, the doctor's power to influence these patients, one way or the other, is virtually complete. 'There are ways to say things,' he said. '"This is your only hope." Or you could say, "Some doctors will say it's your only hope, but it has a 20 times better chance of harming you than helping you." So I'm pretty confident I can persuade people.' ... [Another doctor] at times begins by saying, 'There is a very small chance, but it comes with tremendous cost.'
In these situations, doctors ... see their job as, in effect, parsing the patient's response and trying to determine a treatment plan that is responsive to the patient's wishes but is also not what physicians refer to as 'medically futile' - that is, offering no real chance for cure or remission. That is hard enough. What makes the doctor's decision in such situations even more painful is that 'medically futile' means different things to different physicians.
... During their second meeting, [the doctor] offered her the option of treatment with a drug called 5-azacitidine, which gave many M.D.S. patients some months during which they felt relatively well. But the drug did little to prolong life. My mother replied, with tremendous passion, 'I am not interested in quality of life!'
What [the doctor] knew with the horrified intimacy of long clinical practice, but what my mother could not yet know, was just how agonizing the effects of an unsuccessful stem-cell transplant can be: everything from painful skin rashes to inordinately severe diarrhea to hallucinations and delirium. To me, torture is not too strong or hyperbolic a word. After my mother's declaration, [the doctor] only nodded and began talking about where the best place might be for her to have the stem-cell transplant, going over with her the variations in different medical research centers' approaches to transplantation.
... it seems almost impossible to develop a satisfactory definition of what is and is not medically futile. What is the cutoff? A 10 percent chance of success? Five percent? One percent? When does the 'very small chance' my mother's doctors bought at the 'tremendous cost' in suffering ... become so infinitesimal as to make it no longer worth trying?
I have found no consensus among the oncologists I have spoken with in the aftermath of my mother's death, and I don't believe there is one. There are those who take a strong, consistent stance against not just such treatments but also against the general orientation of American medicine, particularly oncology, toward doing everything possible to save individual patients, no matter how poor their chances. These doctors seem inspired by a public-health model based on better health outcomes for communities rather than individuals, viewing it as the most moral and the only cost-effective way of practicing medicine. This view, often associated with the work of the medical ethicist Daniel Callahan, is increasingly influential.
One reason for this is that the current American medical system is breaking down. Several physicians with little sympathy for Callahan's approach pointed out to me that, like it or not, American society either can't afford or no longer chooses to afford to underwrite the kind of heroic care people like my mother, whose prognoses are obviously poor, still receive in the United States.
***
The image in this article is licensed under the GNU Free Documentation License. It's from the Wikipedia article Cancer.
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Comment by katyzzz
Photography Tips
MS Paint Art
How many doctors do you know who give the time to make simple coherent explanations to their patients and how many patients are there who feel they are simply just a victim to the disease, firstly, and to the treatment proferred, secondly.
Your illustration form 'wik' was good but did little more than say where the term originated and to conjure up images of metastases. Check how you spelled it.
These things are not easy, but for many cancers, nowadays, procedures are routine. Many live in hope for a cure and very few, I would think, are treated with stem cells. You may like to check this out!
katyzzz
Comment by Damo
My brain hurts now.
I don't like visiting the doctors much but I can understand their problems. Particularly if they get some one like me trying to ask all sorts of questions.
One thing is certian is the attitude of doctor is very different that many years ago. They seem to let you have a say and air you concerns.
Comment by Adrienne
Comment by Adrian
Philosophy Blog
Dear Katy, thanks for the spelling tip (I was wholly ignorant of the correct spelling here; and for anyone who's curious, I had "masectomy" for "mastectomy").
Not too concerned about the other points you raise, that the illustration did little more than illustrate, that doctors are time-poor and patients feel powerless, that there is a regularity to treatment and that few can afford stem cells. That is, I get the feeling that you mention these things as qualifications or objections. But I don't feel they are incompatible with anything in the extract.
Dear Damo -- And the change in attitude is a good thing... In my opinion, anyway. Though it does add burden to the system.
It's my impression that, in Sydney at least, med students are trained in communicating with patients -- which doctors sometimes take issue with ("There should be less time on this touchy feely bullshit, dammit, and more time on anatomy").
Dear Adrienne -- Yes, I hear her first time on stage was quite emotional -- not a dry eye in the house.
This is a cruel thing to say, but I think it a good thing that some celebrities are cancer sufferers...
Comment by katyzzz
Photography Tips
MS Paint Art
There is a subtlety in what I had to say other than the obvious and my comments were different.
But, I think you'll find that stem cells have very little application in the treatment of cancer and in fact most stem cell treatment born of desperation has been found to be deficient and dangerous. A lot of it has fallen into disrepute, I'm referring to application already tried not to future prospects but I can't help being sympatico with the other two Orblers who find stem cell research is going nowhere, not particularly relevant here, I know, but one thing does lead to another , you know how it goes.
katyzzz