Musings of a Dinosaur

A Family Doctor in solo private practice; I may be going the way of the dinosaur, but I'm not dead yet.

Tuesday, February 16, 2010

What's the Difference?

I have a friend with widely metastatic cancer. He's been in and out of the hospital recently, along with a stay at "rehab," after which he became strong enough to return home. I've tried calling him, but the word he has put out is that he doesn't want to see anyone right now. He's reserving his strength to "fight this disease!" He did leave me a voice mail a few weeks back, thanking me for my message of love and support, closing with the assurance that, "I will beat this thing."

His oncologist is totally on board with this. My friend is continuing to receive chemotherapy and radiation, complete with their devastating side effects. Recently, he became so weak he had to leave his beloved wife and home to back to the "rehab" facility again, to make up "all the gains he'd made" during his first stay. He's had multiple conversations with his family about his wishes. Nothing has changed. He doesn't want to see friends yet, because he's still fighting. He is adamant that he will win this battle.

But he won't.

My fear is that his refusal to acknowledge this undeniable fact will end up robbing him of the last part of his life, as he spends it "fighting," rather than living. There are many people who love him dearly, and while I understand his loathing of the idea of people coming to visit to "say goodbye," I'm terribly afraid that the next time they gather will be for the funeral. That's the way he wants it, though.

Armed with the insight from OncRN that "patients don't want treatment, they want outcomes," I realized that what my friend really wants is for the disease to be gone and to go back to life as it was. Back to his home and his work; back to his family and his garden; back to watch his grandchildren grow up and dance at their weddings. The oncologist knows (or ought to know) that none of the treatment he has to offer is going to result in that outcome. So he has the choice between trying to help the patient re-align his expectations to make the best use of the rest of his life, or continue to offer "treatment," tacitly agreeing that the patient's desired outcome is possible; anything not to undermine the patient's "hope." But isn't it far more important at times like these to redefine "hope" for the patient, as has been so eloquently expressed elsewhere?

This was the context in which this thought occurred to me:

What is the difference between oncologists who never stop treatment, and the alternative/biomed/quacks who push endless, dangerous, uncomfortable (and expensive) treatments on children with autism spectrum disorders?

  • Both of them have patients (or families) who are desperate.
  • Both of them have patients/families who desperately want/want them to get better.
  • None of these patients ever will.
  • Both feed into their patients'/families' false expectations in the name of "don't give up hope."
  • Both believe they are doing the right thing.
  • Many other people have dealt differently with the same situation, finding satisfaction and fulfillment in dealing more realistically with their circumstances.
Some may say that the difference is that autistic children aren't choosing to undergo useless "biomed" treatments, whereas competent adult cancer patients are, supposedly, fully aware of the pros and cons of the treatments to which they consent. Still, it isn't really treatment they want; they want a specific outcome. And when no treatment can provide the outcome the patient wants, what good is it doing?

My friend remains fully convinced that the treatments he struggles to tolerate will indeed eliminate his disease and return him to his previous state of health. He clings to that, and refuses to discuss any other outcome of his condition. Not really much different from parents who insist that they can "recover" their autistic child, if only they believe hard enough and pay enough money for scientifically useless treatments. What's the difference between their doctors?

Maybe not so much.


At Tue Feb 16, 08:42:00 PM, Anonymous Anonymous said...

And the very sad thing for your friend: he might live longer if were to stop treatment. At times, our therapies shorten rather than prolong life just because they are so toxic.

There is an art to the practice of oncology. As a patient fails, treatments will do more harm than good, although, occasionally, one finds the treatment that beats the disease back and the patient flourishes for a while.....Some oncologists feed the false hope; however, the power of denial (on the side of the patient) can be incredible.

Most oncologists have treated patients who did better and lived longer despite incredible odds. We want that for all of our patients and are guilty of wearing our own cloak of denial so that we don't have to acknowledge that we are powerless to make a patient better.

I recently had the "hard talk" with a patient who likely die of end stage COPD before their recurrent malignancy becomes much of an issue. After explaining why doing everything would not alter the outcome, and that our goals should be managing his symptoms, I called the primary to let him know...Despite multiple admissions in the last few months for COPD, CHF, renal insufficiency" no one had the "talk" because "I am close to him and I didn't want to rob him of hope."

The fault is not always the oncologist's....
An oncologist, trying to do the Right Thing (although occasionally missing the mark because life is often art and not a science).

At Wed Feb 17, 01:01:00 AM, Anonymous Anonymous said...

But that fight, even so futile, is giving him hope. That hope is worth more than the side effects of his treatment.

The treatment isn't, and shouldn't be, up to the doctors to decide. The really compassionate thing is to continue the treatments until your friend is ready to stop.

If the onc refuses to treat him, he will feel that an uncontrollable situation has been made even more uncontrollable. Right now, his treatments are the one physical thing that HE can decide on. Don't take that CHOICE lightly.

I'm a patient, not a doctor, and I've watched those who have gone before me go through this. The devastation they face when their docs pull the plug on treatment is far worse than the brutal side effects of that futile treatment. That loss of control is often followed by a worse depression than you can imagine.

He'll get there, eventually, but it will be on his time. And if he doesn't, he will die feeling good about fighting the good fight.

Peace to you both.

At Wed Feb 17, 08:10:00 AM, Blogger Tanya said...

Do you think that part of this desire to fight a disease at all costs, even when the gain from the treatments is minimal, is kind of a cultural thing? By that I mean that we are constantly bombarded with stories of people who "fight" their diseases and go through horrific treatments and how brave and courageous they are; it's almost like if you're sick with something like cancer and you don't fight, well, you're just not trying hard enough. I'm a cancer survivor, and honestly, I got really tired of people telling me how brave and strong I was. I just wanted to be not sick any more. I didn't want to be brave and strong but I almost felt like if I didn't show that demeanor then a lot of people would be dissapointed in me. I really didn't want to hear about women training for marathons while going through chemo...

At Thu Feb 18, 06:01:00 PM, Blogger Dr. Smak said...

Not much difference, truly.

We do such a terrible job in our society at accepting death. Accepting dying. Accepting people who are dying. Accepting the families of people who are dying.

The lone oncologist can't change that tide, any easier than he can cure your friend's cancer.

At Sat Feb 20, 08:49:00 AM, Blogger mamanimax said...

for a lot of people, denial is a safe place.

At Mon Feb 22, 11:16:00 PM, Blogger Andy said...

i wonder - do you think his oncologist is holding fast and true to the idead that patients must always be allowed to hope? That we should never take that from them?

At Tue Mar 16, 02:52:00 PM, Blogger Kharma said...

too many doctors (especially oncologist) do not understand what *first do no harm* means. It doesn't mean *keep alive at all cost for as long as possible*. Sometimes keeping someone alive is doing harm. When the person does not have any chance of survival or quality of life. Sometimes the best medicine a doctor can give to a patient is to help them accept what is occuring and then offer pallitive care only.Can you tell I understand cancer and cancer care: that is because my mother(ovarian), father(colon), sister(colon at age 49), and cousin(lymphoma at age 53


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