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From: sheder1 on 3 Aug 2008 08:49
Call for better chemo counselling
Doctor consultation
Doctors may need better information on survival

Doctors are too worried to give patients with terminal cancer precise
information about the benefits of extra chemotherapy, say researchers.

Two-thirds of those surveyed by Bristol University scientists were
given no information or just vague promises of "extra time" with loved
ones.

Doctors felt telling patients treatment would offer only weeks or
months could "destroy hope", the researchers said.

Macmillan Cancer Support said national data on survival times was
needed.


Giving comprehensible and appropriate information about survival
benefit is extremely difficult
Bristol University researchers

The study focused on 37 patients with terminal colorectal, lung and
pancreatic cancer.

A researcher interviewed each patient before they saw their
oncologist, then recorded the consultation with the health
professional where further treatment would have been discussed.

Six patients out of the 37 were given a more precise estimate in weeks
or months of their likely extra survival time with chemotherapy, while
five were given a slightly less precise idea of timing.

However, for the remainder of the consultations, there was either no
discussion of the effects of the chemotherapy on survival time, or
very vague descriptions - for instance, saying that the drug could
"buy you some time".

The researchers said doctors were worried that giving precise numbers
could "destroy hope".

They wrote: "Giving comprehensible and appropriate information about
survival benefit is extremely difficult - however, the reluctance to
address these difficulties and sensitivities may be hampering
patients' ability to make informed decisions about their future
treatment."

Statistics missed

Professor Jane Maher, Chief Medical Officer at Macmillan Cancer
Support, said: "I'd like all patients with incurable cancer to have
the information they need to make a decision about whether to have
this treatment.

"But this needs nationally agreed, and regularly updated, statistics,
and earlier conversations with their doctor about the pros and cons of
treatment in the last month.

"At the moment, much depends on the doctor you see."

A spokesman for Cancer Research UK, which funded the study, said:
"This small but interesting study sheds some light on the particular
difficulties in communicating information about palliative
chemotherapy treatment decisions.

"Further work is needed to help us better understand the differing
priorities of patients considering such treatments and the judgements
health professionals make in their approach in these difficult
situations."
From: Steph on 3 Aug 2008 18:41

"sheder1" <turtletrot1(a)bellsouth.net> wrote in message
news:9cb29295-69e0-49e6-a0e4-d81ee5a88686(a)w7g2000hsa.googlegroups.com...
> Call for better chemo counselling
> Doctor consultation
> Doctors may need better information on survival
>
> Doctors are too worried to give patients with terminal cancer precise
> information about the benefits of extra chemotherapy, say researchers.
>
> Two-thirds of those surveyed by Bristol University scientists were
> given no information or just vague promises of "extra time" with loved
> ones.
>
> Doctors felt telling patients treatment would offer only weeks or
> months could "destroy hope", the researchers said.
>
> Macmillan Cancer Support said national data on survival times was
> needed.
>
>
> Giving comprehensible and appropriate information about survival
> benefit is extremely difficult
> Bristol University researchers
>
> The study focused on 37 patients with terminal colorectal, lung and
> pancreatic cancer.
>
> A researcher interviewed each patient before they saw their
> oncologist, then recorded the consultation with the health
> professional where further treatment would have been discussed.
>
> Six patients out of the 37 were given a more precise estimate in weeks
> or months of their likely extra survival time with chemotherapy, while
> five were given a slightly less precise idea of timing.
>
> However, for the remainder of the consultations, there was either no
> discussion of the effects of the chemotherapy on survival time, or
> very vague descriptions - for instance, saying that the drug could
> "buy you some time".
>
> The researchers said doctors were worried that giving precise numbers
> could "destroy hope".
>
> They wrote: "Giving comprehensible and appropriate information about
> survival benefit is extremely difficult - however, the reluctance to
> address these difficulties and sensitivities may be hampering
> patients' ability to make informed decisions about their future
> treatment."
>
> Statistics missed
>
> Professor Jane Maher, Chief Medical Officer at Macmillan Cancer
> Support, said: "I'd like all patients with incurable cancer to have
> the information they need to make a decision about whether to have
> this treatment.
>
> "But this needs nationally agreed, and regularly updated, statistics,
> and earlier conversations with their doctor about the pros and cons of
> treatment in the last month.
>
> "At the moment, much depends on the doctor you see."
>
> A spokesman for Cancer Research UK, which funded the study, said:
> "This small but interesting study sheds some light on the particular
> difficulties in communicating information about palliative
> chemotherapy treatment decisions.
>
> "Further work is needed to help us better understand the differing
> priorities of patients considering such treatments and the judgements
> health professionals make in their approach in these difficult
> situations."

I know how hard it is to tell people they are dying..........I have to do it
every week. But that's one of the things I'm paid for.
Giving people false hope is easy.

From: Uncle Sally on 8 Aug 2008 09:26
Hi Steph,

"I know how hard it is to tell people they are dying..........I have to do
it every week. But that's one of the things I'm paid for."

I am sure you do much more than you are "paid for," and I have "boundless
admiration and respect" for someone like you who can do what you do and
still find time to come here and give valuable advice and support.

"Giving people false hope is easy."

I think there's a profound metaphysical dimension to the psychology of hope,
and I think any formulaic approach is a contradiction in terms.

As Yogi Berra said : "In theory there is no difference between theory and
practice, but in practice, there is."

I'm guessing that many of us here have read Stephen J. Gould's wonderful
essay on "The Median is Not the Message" and pondered over statistical data
we have found for our type of cancer, and its stage, and the treatment
modalities used. Hope that we are one of the "outlyers" on the end of the
bell-curve who doesn't have a recurrence, or who has a complete cure, or
remission.

In spite of the fact that I "know better," my mind keeps coming back to the
fact that I am in the 5-10% or so of people with SQCC of the tongue who
never smoked or drank, and then constructing a fantasy scenario that ...
because of that ... I will "get a pass" on recurrence. Yet on another, more
"rational," level my western-acculturated-Aristotelian-syllogizing self
demands to "know the truth," even if the truth not only not set me free, but
depress the hell out of me, shatter my dreams. I crave freedom and
lotus-eater-oblivion simultaneously, thanks.

On some level I know this is "delusional" ! But my "soul" wants to see that
movie rather than deal with existential uncertainty :)

It seems to me that "surgery" on hope (to remove false hope, while sparing
true hope ? to implant true hope where there is hopelessness ?) which was
once the province of faith and religion has been transposed into the medical
arena in our time.

I envy your task not, Sir, while being thankful you take it on.

regards, Uncle Sally

"Wisdom tells me I am nothing. Love tells me I am everything. Between the
two, my life flows." Nisargadatta


From: Steph on 8 Aug 2008 11:20

"Uncle Sally" <therealUncleSally(a)gmail.com> wrote in message
news:gQXmk.204872$o12.55363(a)fe03.news.easynews.com...
> Hi Steph,
>
> "I know how hard it is to tell people they are dying..........I have to do
> it every week. But that's one of the things I'm paid for."
>
> I am sure you do much more than you are "paid for," and I have "boundless
> admiration and respect" for someone like you who can do what you do and
> still find time to come here and give valuable advice and support.
>
> "Giving people false hope is easy."
>
> I think there's a profound metaphysical dimension to the psychology of
> hope,
> and I think any formulaic approach is a contradiction in terms.
>
> As Yogi Berra said : "In theory there is no difference between theory and
> practice, but in practice, there is."
>
> I'm guessing that many of us here have read Stephen J. Gould's wonderful
> essay on "The Median is Not the Message" and pondered over statistical
> data
> we have found for our type of cancer, and its stage, and the treatment
> modalities used. Hope that we are one of the "outlyers" on the end of the
> bell-curve who doesn't have a recurrence, or who has a complete cure, or
> remission.
>
> In spite of the fact that I "know better," my mind keeps coming back to
> the
> fact that I am in the 5-10% or so of people with SQCC of the tongue who
> never smoked or drank, and then constructing a fantasy scenario that ...
> because of that ... I will "get a pass" on recurrence. Yet on another,
> more
> "rational," level my western-acculturated-Aristotelian-syllogizing self
> demands to "know the truth," even if the truth not only not set me free,
> but
> depress the hell out of me, shatter my dreams. I crave freedom and
> lotus-eater-oblivion simultaneously, thanks.
>
> On some level I know this is "delusional" ! But my "soul" wants to see
> that
> movie rather than deal with existential uncertainty :)
>
> It seems to me that "surgery" on hope (to remove false hope, while sparing
> true hope ? to implant true hope where there is hopelessness ?) which was
> once the province of faith and religion has been transposed into the
> medical
> arena in our time.
>
> I envy your task not, Sir, while being thankful you take it on.
>
> regards, Uncle Sally
>
> "Wisdom tells me I am nothing. Love tells me I am everything. Between the
> two, my life flows." Nisargadatta
>
>

Thanks US. Thoughtful as ever.
As well as hoping that patients are in the 5-10% at the "good" end of the
bell curve, whether because of treament or despite it, I know that an equal
number will be at the "bad" end. If that is in spite of treatment, it's one
thing. If it's because of treatment, it's another.

From: J on 20 Aug 2008 21:44
Steph wrote:

> "sheder1" <turtletrot1(a)bellsouth.net> wrote in message
> news:9cb29295-69e0-49e6-a0e4-d81ee5a88686(a)w7g2000hsa.googlegroups.com...
> > Call for better chemo counselling
> > Doctor consultation
> > Doctors may need better information on survival
> >
> > Doctors are too worried to give patients with terminal cancer precise
> > information about the benefits of extra chemotherapy, say researchers.
> >
> > Two-thirds of those surveyed by Bristol University scientists were
> > given no information or just vague promises of "extra time" with loved
> > ones.
> >
> > Doctors felt telling patients treatment would offer only weeks or
> > months could "destroy hope", the researchers said.
> >
> > Macmillan Cancer Support said national data on survival times was
> > needed.
> >
> >
> > Giving comprehensible and appropriate information about survival
> > benefit is extremely difficult
> > Bristol University researchers
> >
> > The study focused on 37 patients with terminal colorectal, lung and
> > pancreatic cancer.
> >
> > A researcher interviewed each patient before they saw their
> > oncologist, then recorded the consultation with the health
> > professional where further treatment would have been discussed.
> >
> > Six patients out of the 37 were given a more precise estimate in weeks
> > or months of their likely extra survival time with chemotherapy, while
> > five were given a slightly less precise idea of timing.
> >
> > However, for the remainder of the consultations, there was either no
> > discussion of the effects of the chemotherapy on survival time, or
> > very vague descriptions - for instance, saying that the drug could
> > "buy you some time".
> >
> > The researchers said doctors were worried that giving precise numbers
> > could "destroy hope".
> >
> > They wrote: "Giving comprehensible and appropriate information about
> > survival benefit is extremely difficult - however, the reluctance to
> > address these difficulties and sensitivities may be hampering
> > patients' ability to make informed decisions about their future
> > treatment."
> >
> > Statistics missed
> >
> > Professor Jane Maher, Chief Medical Officer at Macmillan Cancer
> > Support, said: "I'd like all patients with incurable cancer to have
> > the information they need to make a decision about whether to have
> > this treatment.
> >
> > "But this needs nationally agreed, and regularly updated, statistics,
> > and earlier conversations with their doctor about the pros and cons of
> > treatment in the last month.
> >
> > "At the moment, much depends on the doctor you see."
> >
> > A spokesman for Cancer Research UK, which funded the study, said:
> > "This small but interesting study sheds some light on the particular
> > difficulties in communicating information about palliative
> > chemotherapy treatment decisions.
> >
> > "Further work is needed to help us better understand the differing
> > priorities of patients considering such treatments and the judgements
> > health professionals make in their approach in these difficult
> > situations."
>
> I know how hard it is to tell people they are dying..........I have to do it
> every week. But that's one of the things I'm paid for.
> Giving people false hope is easy.

More along this line...
http://www.nytimes.com/2008/08/19

In Cancer Therapy, There Is a Time to Treat and a Time to Let Go

By JANE E. BRODY
Published: August 18, 2008

Thirty years ago Forbes Hill of Brooklyn learned he had prostate cancer. At age
50, with a young wife and a fear of the common side effects of treatment �
incontinence and impotence � he chose what oncologists call �watchful waiting.�
For 12 years, Mr. Hill was fine. Then in 1990 his PSA count, a measure of cancer
activity, began to rise, and he had radiation therapy. That dropped the count to
near zero. In 2000, with the count up again, he chose hormone therapy, which
worked for a while.

Three years ago, with his PSA level going through the roof, he learned that the
cancer had spread to his bones and liver. It was time for chemotherapy, which
Mr. Hill said he knew could not cure him but might slow the cancer�s progress
and prolong his life.

His oncologist was candid but not very specific. His doctor told him that with
advanced metastatic hormone-resistant cancer like his, 90 percent of patients
die within five years no matter what the doctors do, and about 10 percent
survive six or more years.

�I took that kind of hard,� said Mr. Hill, an associate professor of media
studies at Queens College. �I always thought I would live to 90, but I guess now
I won�t.�

He has just started radiation to the brain, perhaps with infusions of an
experimental drug afterward. �I�ll try chemo for six months, but if it gets too
uncomfortable and inconvenient... ,� he said, trailing off. �Having lived 80
years, I�ve done a lot. I don�t have reason to think I�ve been badly treated by
life.�

Mr. Hill seems ready for a time when treating his cancer is no longer the right
approach, replaced instead by a focus on preparing for the end of his life.

But doctors who have studied patients like Mr. Hill say that often they do not
know when to say enough is enough. In a desperate effort to live a month, a
week, even a day longer, they choose to continue costly, toxic treatments and
deny themselves and their families the comfort care that hospice can provide.

Tough Decisions

Specialists in ovarian cancer from University Hospitals Case Medical Center in
Cleveland described a study of 113 patients with ovarian cancer in the journal
Cancer in March.

�Patients with a shorter survival time,� they found, �had a trend toward
increased chemotherapy during their last three months of life and had increased
overall aggressiveness of care [but] did not have improvement in survival.�

The team concluded, �Our findings suggest that in the presence of rapidly
progressive disease, aggressive care measures like new chemotherapy regimens
within the last month of life and the administration of chemotherapy within the
last two weeks of life are not associated with a survival benefit.�

With aggressive therapy, the majority of the women in the study who died did so
without the benefit of hospice.

Dr. Thomas J. Smith, an oncologist and palliative care specialist at the Massey
Cancer Center of Virginia Commonwealth University, said in an interview that
patients needed to understand the tradeoffs of treatment.

�Palliative chemotherapy, which is what most oncologists do, is meant to shrink
cancer and improve the quality and quantity of life for as long as possible
without making patients too sick in the bargain,� he said.

The Cleveland team pointed out that the treatment goal can, and should, change.
�There is a difference between palliative chemotherapy administered early in the
trajectory of disease and near the end of life,� the researchers wrote. �The
goal of end-of-life care should be to avoid interventions, such as cytotoxic
chemotherapy, that are likely to decrease the quality of life while failing to
increase survival.�

In fact, those who choose hospice over aggressive treatment often live longer
and with less discomfort because the ill effects of chemotherapy can hasten
death, Dr. Smith wrote in a review of the role of chemotherapy at the end of
life, published in June in The Journal of the American Medical Association.

Some patients are just unwilling to acknowledge that nothing can save them, and
want toxic treatment even if it means only one more day of life.

And sometimes patients are reluctant to relinquish treatment because they are
terribly afraid of dying, of being alone cut off from care, Dr. Smith said in
the interview. Patients may fear, with some justification, that if treatment
stops the doctor will abandon them.

It is not only patients and their families who may insist on pursuing active
treatment to the bitter end. Sometimes, doctors subtly or overtly encourage it.
Oncologists may be reluctant to acknowledge that they can no longer sustain a
patient. They may fear destroying a patient�s hope. Or they may be covertly
influenced by the fact that their income comes from treatment, not from long
discussions with patients and families about why palliative therapy should yield
to supportive care.

Dr. Smith says that cancer treatments �have a huge price tag of up to $100,000 a
patient per year,� which can impoverish even insured patients when there is a 20
percent co-pay.

He urges doctors to talk about hospice early, while treatment options are still
available, and to assure patients they will not be abandoned in hospice.

Switching to Comfort Care

While there is no official definition of futile care, Dr. Smith suggests that it
represents care that is �very unlikely to help and likely to harm.�

The National Comprehensive Cancer Network has established some guidelines about
when to switch to comfort care. They vary according to the type of cancer and
nature of available treatments, but in general they include when a patient has
already been through three lines of chemotherapy or when their performance
status � how well they can function in daily life � is poor.

Dr. Smith said most chemotherapy regimens had been tested only in patients who
are relatively well, independently mobile and able to perform most of the tasks
of daily life.

For those who are confined to a bed or a chair for half or more of the day, �it
is time to think long and hard about continuing treatment,� he said. �It�s time
to have an extensive discussion with patients about their goals and the risks
and benefits of chemotherapy.�

He suggested that doctors �put everything in writing � here�s what you have,
what we can do for it, what will happen with treatment and without it � so that
everyone is on the same page,� eliminating the risk that wishful thinking colors
what patients hear.

When faced with a patient who says, �I�ll do anything to live two minutes
longer,� Dr. Smith said the doctor should ask: �What is your understanding of
your illness? What would you like to do with the time remaining?�

For most people, he added, the time left would be far better spent putting their
affairs in order, preparing their funeral or memorial service, repairing damaged
relationships, leaving lasting legacies and saying their goodbyes.



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