Jen’s Posterous

But patients shouldn't have to be continually subjected to the 'tyranny of positive thinking'.

Not everything can be 'positive'. Case in point: organ transplantation -- how 'positive' can you be, having to hope that someone healthy will die so you can live?

Good for you! I couldn't agree more! And well said: whose job is it to kill off hope??

I know a portion of the doc culture says to not give "false hope." I understand the sentiment but it's SOOO patronizing: like, "we the gods ought not to let the poor fools get the idea that something might happen that we know never will."

Or am I being overly obnoxious?

How many times have highly unpredictable things happened? And who gets to say that the goal is to maximize happiness? What if someone's quite well-informed and, having thought it out, is quite *happy* to choose current inconvenience, preferring to see what might happen in the future?

Question: is there such a thing as false hope, if patients are fully empowered and educated?

Thanks Dave for directing me here! I know one of the great oncologists at Dana Farber. He is truly one of my great heroes. Because besides being a fantastic scientist he is also one of those special doctors who will NEVER, EVER take hope away. We've discussed this and he simply said "who am I to know what will happen with this particular patient? Of course my experience tells me the chances are minimal and the probable outcome is bleak but you never know what may happen tomorrow." Hundreds of patients have reported on their personal experience with this particular oncologist and I have found only a single patient reporting a bad encounter.

If this exceptional doc can behave like this, while dealing with amazingly complex and dire cases, every oncologist and doctor can too! All those who don't should be taken to task. They remind me of the cardiac electrophysiology specialist who told my wife bluntly: "You are at very high risk of sudden death. You are my responsibility and must do what I say." To which she responded "Doctor, this room is too small for the 2 of us. Either you leave by the door or I'll jump out the window"

False hope doesn't exist. You are either alive or dead.

Hi Jen, great post!! You know my situation, even worse now with the open leg wounds caused by cellulitis. (www.lodewijkbos.com)
Hope is one of the essential elements of the placebo effect, i.e. the power of self-healing. Life exists because of hope. No white coat should ever be allowed to take away hope from a patient. They should be there to support, but also to comfort if reality makes maintaining hope a challenge.

UK Twitter user @EvidenceMatters said: "Posterous playing up so couldn't comment. McManus et al http://tr.im/xQ2P reported 1% unexpected LT survival."

Let me quote a good portion of the abstract for "Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review", Palliative Medicine 2007; 21: 507—517:

"Results showed that although the majority of HPs believed that patients and caregivers should be told the truth about the prognosis, in practice, many either avoid discussing the topic or withhold information. Reasons include perceived lack of training, stress, no time to attend to the patient's emotional needs, fear of a negative impact on the patient, uncertainty about prognostication, requests from family members to withhold information and a feeling of inadequacy or hopelessness regarding the unavailability of further curative treatment. Studies suggest that patients can discuss the topic without it having a negative impact on them."

Do we need to say more?

I don't see the original author advocating "correcting" false hopes, rather offering their best interpretation of the truth as they see it. I hope providers offer me their educated opinion about probable outcomes as we (we = provider and I or greater community) currently understand them. Hope is then in my hands. Whether I identify more strongly with the 1 in 100 who live or the 99 in 100 who die is up to me.

I think there is such a thing as false hope. Hope becomes false when it prevents someone from mitigating or preventing negative consequences to them or their family. As in "No I don't need to update my will -- 1% of people with this treatment live!"

So I do think a medical provider has a responsibility to help put hope into some perspective. My first thoughts about this were a financial analogy ... if my college educated friend with a six-figure income solely supporting his family came to me after losing his job and said he wasn't updating his resume because he hoped to win the lottery with his severance check, few would consider him anything but reckless and probably stupid. A professional financial advisor supporting those hopes as part of his financial plan would likely face sanctions or criminal charges. How is supporting improbable hopes in patients really that much different for a healthcare provider?

Hi Rob - fwiw, but I never would have considered not updating my will. To me it's just plain ignorant if someone equates "1% chance of surviving" with "no problem." :) But I hear you... I'm just saying that being an engaged patient doesn't mean someone's instantly brilliant.

Of course I agree that the truth should be told to the patient in as much detail as possible. However, if my memory and information serve me right, based on research oncologists do not or only very rarely give a time prediction for expected death anymore. Because it is known that giving a time indication influences the patient's mindset. So there is a difference between giving all details and taking away hope. To use the 1% example, that 1% might be that little bit of hope that is needed to create a completely different development of a patient's process.
I have been told a couple of times in my life that my chances to survive were minimal or even less, the last time 3,5 years ago with my cancer. That only helped me to focus on that minimal chance and to prove all "predictions" wrong. Had I not known all the details, I would not have had that focus and would probably have been less determined. Although most of my friends called it stubbornness, I know it was hope.

Brilliant post, Lodewijk!

With perfect timing, last night we also posted Cheryl Greene's e-patient story. It occurs to me that once again context is decisive: any history-based calculation of expected outcomes is thrown out the window of the current case evolves in a new environment - such as a patient discovering a treatment that's not widely known, even to their physician.

In my own case, the median survival time was 24 weeks, but that data was accumulated when diagnoses happened when most people arrived "almost dead." And, again a shift in context - the data was gathered before any of today's treatments existed.

Last Christmas I met Dr. Othon Iliopoulos of Mass General at a Christmas party. A wonderful Greek with huge eyebrows and bigger eyes, he told how he used to carefully give people the most accurate info he had about their stage IV kidney cancer.... and would watch the life go out of them, on the spot. Now, he says, when they ask "Am I going to die?", "I tell them 'I...don't...*know*. But we will try *everything*. Will you work with me?"

And, delightfully: "And then I tell them 'Just one thing: if we save you, you *must* *drive* *carefully*. I do not want to do all this and have you waste it!" What a great doctor - creating hope and joy, with a clear sense that we can see to the other side. AND personal responsibility.

Hey, here's a patient-driven thought:

We could start evaluating ALL such outcome data by asking "Was this data collecting using e-patients?"

Everyone should read Cheryl Greene's e-patient story. Dave's comment is spot on. I have seen by now thousands upon thousands of cases of cancer patients communicating via ACOR communities who demonstrate that their personal outcome far outdid what the literature said. I have also seen many cases where the patient died faster than what was expected. You never know and no one should ever try to play the odds, IMO.

As for better outcomes with e-patients, I know it is true in certain cases. Because if patients have no access to real specialists they won't have access to the best available treatments for THEM. Since ACOR deals with unusual diseases I am quite sure our stats about the effect of participation are skewed. But I love this kind of skewed data!

Excellent post and comments! I have nearly 9 years now status as a "professional patient" :) and nearly 5 years now as a "professional nurse." I actually became a nurse because of my experiences as a patient, and I do not believe the two experiences can be disconnected from each other. It *is* personal - we *are* people with experiences. Yes, you have to be objective and patient-focused as a nurse, but in the back of your mind, your experiences still play a role in your thought-processes as well! The doctors I have been working with for years are still my doctors because they NEVER gave up hope on me. Every time I would come to the office fearing the words "Sorry, we've done all we can" - those words never came. :)

So as a nurse - I work in the Neonatal Intensive Care Unit - a Level III unit where we see and do things that most people cannot imagine. We do one therapy for babies who experience traumatic birth injury in the hopes of preserving whatever brain function may be left and lessening the chances of Cerebral Palsy in the long run. This treatment, from the last research I read, helps 1 in 6 babies. The babies it does help are ones that are in the moderately injured category - it hopefully helps them move into the mildly injured category. These are not great odds, yet we still do it - the long-term studies of this treatment are going to take awhile yet, as we are doing extended follow-up on all kids who have been through the therapy.

I have seen many things with these kids - from kids who turned out totally fine, to children who eventually did not make it because their injuries were so devastating. It is often conflicting in terms of hope. Babies are very different than any other point in the human condition - they need us completely to do EVERYTHING for them - hold them, feed them, change them, move their position, etc. A baby who is on a ventilator and not necessarily doing very much, to a parent who has never had another child, may not look that different, and it is very hard for them to "get" the reality of what is happening. They make choices based on the fact that it is still a cute baby that they can hold, just like any other baby. That baby, if so severely damaged in brain function, will often grow into an older child who remains fully dependent on others to provide its every need.

My goal in these situations is to make sure the parents understand this, but not EVER to take away their hope. In fact, I often say to parents that it is their job to remain hopeful for their child. :) We want them to have all the facts and be aware of all the potentials, good and bad, but if anyone is still going to have hope in dire circumstances, it should be the parents most of all. Do I always agree with decisions made based on hope? No, I don't. But it is not my choice - it is not my child. Some parents will take home a severely brain damaged child who cannot interact with the outside world, and provide care for that child exquisitely until the child dies, while never abandoning hope for that child. Is that wrong? NO!!!

And - babies, if nothing else, are extraordinarily resilient - they survive things that we never could. There are so many unanswered questions. It is always good to inform parents of the potentials - they should be prepared for what may happen, but it is not my job to take away hope, nor would I ever want it to be. Even as a nurse who knows the reality of what can happen to some of these kids, I still hope the best for them - I still hope the next time I walk in that room, they will be looking better. Hope is a powerful thing. :) (Sorry for the length!!)

Lizz, what a fantastic comment!

I would like to invite you to write the story in a full post at the e-patients.net blog. We need to have more input from nurses, since you are the ones who are constantly on the frontline.

I have a particularly weak spot for Neo Natal Care Unit nurses because I spent much time in one of them. You are all my heroes. The support and information I git from them was fundamental to make me understand what we (that means all the individuals of the family unit) had to deal with and what should be done to optimize the outcome for a fairly premature baby (nothing compared with what you see every day)

I read this article myselfand intended to access the original research to get a clearer idea what they were actually assessing. Strangely the Nov. edition of Health Psychology is not yet available online. Usually when academics press release their work there is at least a fuller document to look toward but not in this case. Still Peter Ubel's profile (http://www.lsa.umich.edu/psych/people/directory/profiles/faculty/?uniquename=paubel) links to a NYT article from 2007 which seems to cover the same ground (http://www.nytimes.com/2007/12/09/magazine/09_23_hope.html?_r=2&ref=magazine&oref=slogin)
So we are left with only a few details of what the study is actuall about. Patients who have permanent colostomys seem to increase scores more in Quality of life and Life satisfaction than those who have temporary colostomies. But what about all the other factors that could be influencing these results? What were the indications for colostomy? How unwell were the patients before the operation?

So we don't really know very much about these patients or what else might be influencing their scores. Next, we don't know that the difference in sores has anything to do with hope or 'false hope'. The patients with the temporary colostomy may feel more aggrieved about the situation but if they have been told that the procedure is temporary in what way is this false hope? I really don't understand Dr Ubels's conclusions but that might be because we are missing data. Could he be suggesting that the patients who are to have a temporary colostomy should be told that they are to have a permanent one so that when it is eventually reversed they feel better? I don't think so.

All of this sounds a bit silly to me and I am not sure that it is worth commenting further on!

With regards to honesty about treatment outcomes, which I think is in no way related to this dubious reserach, then it sounds like different people want different things.
Dave is suggesting that engaged patients may have better outcomes than non-engaged patients for cancer. Why might that be?
Giles links to research which shows that doctors feel uncomfortable with truth-telling and the feelings of powerlessness which can result from knowing that one does not have a treatment which will 'cure' a patient. Dave then mentions an oncologist who wants to doall that he can to help save a patient. Does this include being open and honest about success rates?
There is a lot to unpack here. I'm now going to link to a blog post I did earlier this year about teaching medical students about breaking bad news and some of the issues that were raised for me. http://wishfulthinkinginmedicaleducation.blogspot.com/2009/02/teaching-communication-skills.html

Thanks!

And Lodewijk, I'm sorry bit I don't know the ins and outs of your story but my thoughts are with you now. Are you saying that you think you did better because you didn't have all the facts and figures about your illness?
How does that fit with being an epatient? Thanks.

Gilles, Thank you so very much for your kind response! I would be honored to write it as a full post for e-patients! I have been reading the site for awhile now, and I think it is amazing!

I'm very glad to hear you had a positive experience with NICU nurses. :) The NICU is an extremely anxiety-ridden place for parents of babies of all levels of illness. Some of our babies are only there for 48 hours after birth just to rule out infection - and those parents STILL didn't get the birth/bonding experience they were hoping for, so even though their child isn't really very sick and is going home after 2 days, it's still a difficult experience for them. Parents of premature babies can spend anywhere from a few weeks to several months with their child in the NICU - and they are some of the ones that need the *most* guidance on optimizing the care. We can't expect families to just come out of nowhere knowing the right answers for how to proceed. It is the family's ultimate choice in decision making, but it needs to be an openly communicated process between family and medical team!

Please feel free to email me at LizzPiano@gmail.com regarding writing a full post for e-patients. Thank you once again for your response!!

Lizz, I completely agree with Gilles. Thinking back to my own daughter's (non-ICU) neonatal days, I'm nearly moved to tears by what you wrote.

Thank you Dave!
Anne Marie, I said in my reaction that if I had "not known all the details, I would not have had that focus and would probably have been less determined." So because I knew the ins and outs I could "focus" my determination to survive.
In addition to what is said in the original LATimes article (and thus probably in Ubel's article) and Anne Marie's remark about it, there are other processes involved as well. I quote: "We think [the permanent colostomy patients] were happier because they got on with their lives". For 3 years now, as a consequence of my chemo, I suffer from serious polyneuropathy (you can see details at www.lodewijkbos.com), at such a level that at the beginning of this year I decided that if within 12 months things did not change considerably, I would seriously consider pulling the plug. That has led to a certain level of acceptance, as treatment of the neuropathy seems to be impossible. Since then I have gradually felt better, although objectively seen the problems have not really changed.
So on the one hand there is the aspect of hope, on the other hand the aspect of acceptance.

Dear Lodewijk, Thank you for the link to your blog. I'm very interested in how the stories like your blog can be used in medical education so i might be back in contact with you about this.
I'm sorry I misread your post. I guess to be honest, it is almost couter-intuitive that hearing you had less chances of success made you fight even more. You are a very strong person.
It's fascinating how your decision to allow yourself to stop chemo if things did not get better (in a sense giving yourself some control back) allowed you to be happier to continue.
I think that a sense of control has a lot to do with acceptance, and I'm guessing is a factor in why those with permanent colostomies are more happy.
I think the study is probably interesting enough in itself, I just can't see from the details given how it can be abstracted to "giving hope".

Dear Anne Marie, To avoid misunderstandings, I did not stop my chemo, it was finished according to protocol because the cancer had disappeared and after 3 years is still in remission. Although I did recover from the cancer, I did not recover from the treatment. That's why I call myself a chemo patient.
Looking back at the past 3,5 years it is strange to realize that the "battle" in the first part of the story (the cancer process) was based on hope whereas the "battle" in the second part (the post-chemo process) is based on acceptance.

Liz, an impressive reaction and it shows once more the mystery of life which is far more than hope or acceptance.

Dear Lodewijk, I've read the first post of your blog now. But it was still a shock to me to come back to this and read what you meant by 'pulling the plug'. I don't feel comfortable interpreting your feelings or emotions so I will stop.
I hope that you keep winning your battle to accept your condition. And I hope that your symptoms ease- miracle though that might be.

Dear Anne Marie, I'm sorry if i did upset you. I think that all who have been in similar situations will have had moments they considered pulling the plug. And it is that miracle of hope and acceptance that makes you want to go on fighting. But those moments of despair are essential parts of the process and, imho, should be mentioned as well.

Agreed, Lodewijk: I think the world needs to know that there is, always, the option to give up, to call it quits. In my experience having accepted that gives one new power to move forward, saying "No, I'm NOT calling it quits. I choose to do what I can."

Somebody once said "There's no authentic 'yes' unless there's really space for a 'no.'" My sense was that I was more able to say "I choose to live" after I'd fully faced the thought of breathing my last, and accepted what I imagined it would be like. Then I could turn away from it.

One more thought on reviewing this thread - re Gilles's note on ACOR patients outliving expectations:

I think it's important for clinicians to recall that the whole purpose of statistics (and rigorous analysis of the data behind them) is to seek a more reliable view of the future. It's VITAL to remember that all data was collected in the past and circumstances may have changed.

Note, I did not just say "all data is invalid." BUT, it's a logical error to look at past outcome and think it's false hope to look for new solutions.

The more I think about it the more I think "false hope" is a form of unintended arrogance - not in the sense of haughtiness, but in being overconfident about how perfect our knowledge is.

Maybe it comes down to this: "We're very sorry, but you have only a 1% chance" vs "You have a 1% chance. Wanna try some things?"

(And I wish to hell I'd more often hear clinicians say "The best data we have isn't all that good, so let's look at it but not be limited by it.")

Dave, I agree with you. Data should be a tool, to be used to help suggesting solutions, but not the solution itself.

I've just now clicked through to Lodewijk's posts about his condition. Good lord, I had no idea, Lodewijk. Thank you for letting us know, and thank you for artfully inserting those tiny thumbnails so those who dare could click through and see your wounds. If I were in your situation I think I might do the same.

And how incredible that you blog your journey so openly and so movingly.

For those who want to sit themselves down and be deeply moved for a few minutes, here are his most recent. Steel yourself; this is real:
Lodewijk's third anniversary of starting chemo, August 11
Next post, November 3 - very rough
Latest post, November 11 - getting rougher

Anybody who wants to play with odds and patient hope, pay attention! Fresh from this morning, another story from an ACOR member, with an initial (at diagnosis) life expectancy of a few weeks:

"List Members and anybody that wants to listen: In spite of Mets (multiple metastases), Stages and grades of my cancer, Algorithms and countless dire predictions, my Oncologist just called and said Happy Birthday, Happy Thanksgiving, Merry Christmas, and Happy New Year 'cause hey, I'm still NVED (No Visible Evidence of Disease)!!!! I'm still Stage IV, Grade IV but that's 32 months since diagnosis and 11 months NVED. I'm happy."

Wow. There's no way to keep this brief, so I won't even try.

Wow. Thanks to all who shared personal stories of hope, redemption, and clinical information of statistical relevance.

Realism and optimism, in addition to pessimism, all have their place in individual health decision making.

I *hope* that's something upon which we will all be able to agree after reading this small sampling of narratives.

When we discuss options for treatment, for getting on, for moving forward, I hope we begin to include a more realistic discussion of statistics and probabilities, and their limitations - in studies detailing talar fractures and recovery many of the participants were older with comorbidities or other behaviors that altered outcomes, such as smoking, which didn't pertain to me at all.

Cynthia - your point about not succumbing to the 'tyranny of positive thinking' is well taken. Thank you for sharing it.

One area in which I experienced this particularly was in my church community setting, where platitudes were often uttered that drove me near batty, including the "just stay positive" and "God has a plan for you" type lines (even if I believed, as I still do, that I should - in answer to the first, and he did, even if I couldn't see it).

However, it was easy to realize early on that the people who bludgeon a person who is ill/injured/in recovery with positive thinking that may make them uncomfortable aren't sure what else to say.

In other words, what someone else - whether they are a doc, or a parent, or a friend - says to you when they try to either imbue you with positivity or rope in hope with realism often has much more to do with *them* and their perspectives/fears rather than *you* and the personal reality of your condition and your chosen approach.

Some people have no concept of what you're going through. As people who are patients, I think we have to accept that you "don't know it until you go it," or it's near impossible to explain your response to patienthood to someone who hasn't been there. Don't stop trying though, because it's vital to get patienthood out of the realm of 'other.'

In addition, secretly, I think many people don't want to imagine the seriousness or difficulty of significant injury or illness, and they are defacto forced to when they look at you.

Their unflailingly positive outlook may be an attempt on their own part to reassure themselves internally and subconsciously that 1. such a thing surely cannot befall them and 2. if it did, surely they too would be smiling and asking for prayers in church. Surely, they too would be strong. Surely, they too would heal, not die.
But all of this is by no means certain.

I found it an easier road all around to thank people for their well wishes and reassure them that they were being heard, and appreciated (which they were...when anyone is able to speak with you without staring at the 15 pound Tinkertoy monstrosity on your lower leg it feels like a bit of a gift of normalcy).

Gratitude is a much easier response than to explain that their positive thinking was an overly simplistic response related to the clinical complexity of my condition.

Then I would have just sounded like an asshole, and where would that have gotten any of us?

Gilles - the oncologist you mention sounds like a gem of a human being and a damn good doctor besides. I'd like to meet him or her. If you would be willing to make a virtual introduction that would be very much appreciated. One of the most amazing things I think may happen during a set period of 'patienthood' is the ability to consider 2 things vital in life: 1. today and 2. tomorrow. Anyone (doc or otherwise) who can talk about both in the context of my health decision-making is a-ok by me. Thank you for providing a specific and positive example of someone practicing medicine who finds the concept of potential "tomorrows" important.

Lodewijk - I'm so sorry to hear about your continued pain, and am amazed that in spite of all that's happened to you you are still able to vocalize the need for comfort. It's often sorely lacking in interactions, and sometimes more important that 'clinically realistic' care. When I was learning to rewalk, comfort and support in the face of a dark reality was the medicine that enabled me to get up and try again, and again, and again. It had nothing to do with Xrays showing me I was walking on broken bone that still had deep fault lines. Comfort persisted in spite of clinical evidence, and because of that net support I was able to persist. Thank you for your support of me, and Maarten, and so many others who would not be doing the work we are doing now without your mentoring. You are accomplishing amazing things, my friend, not the least of which is done via your stubbornness and fingernails dug in to hope.

Rob - your point about clinicians sharing probable realities is vital here. I hope and expect my providers to do exactly the same. Thank you for pointing out the importance of a realistic, honest and open discussion of probable outcomes. Logical data gathering is a vital part of health decision making.

However, I also expect that not to be the endpoint of any discussion - I hope from there we progress to talking about what to *do* for my treatment after an overview of the 'market'. I'll use a pithy metaphor to illustrate the point. Excuse the graceless approach, but I think the underlying structure of information delivery is apt in the case of healthcare decision-making.

In some cases when pitching a startup business plan, you give a market and competitive overview before you launch into the options for a solution and describe how the business you've chosen to start will address that opportunity. If we provide an 'overview' of probable outcomes, followed by a discussion of how each potential treatment option may address each 'opportunity,' in an individualized context for each patient, I think we'll be much closer to standardizing the approach you detail above.

Hope is in the individual's hands, as is preparation for all potential outcomes (good and bad). I think preparation can be accomplished without losing hope, or it can be done independent of that, and is related to each person's goals overall, ie protect my family is my goal, no matter what happens to me, so I construct a will. I think we have to be careful not to confuse the two as codependent variables that are inextricably linked - they are often not.

Lizz - resiliency and reality are such intricate and often hidden parts of the human condition that we forget we have overwhelming quantities of both when we're first starting out. Your story of neonatal triumph and love overwhelms me and thank you for sharing it here. I often forget and think of babies as delicate things, but in reality those little ones are made to withstand more trauma than cockroaches, who could weather a nuclear blast. The truth is, life overall is delicate, and we are amazing machines meant to take a great deal of abuse and keep on tickin.' The fact that we personalize our journeys through emotive sharing makes life worth living despite terrors - the ability to triumph in the face of seemingly inexplicable odds is what babies do just about every day. Now please excuse me while I look at a picture of my niece Ellen and offer up a little prayer of thanksgiving and love, which I also extend to you and the babies you care for.

Anne Marie - thank you for the full explication of the study's potential flaws and shortcomings. Appreciating the complexities of bias in clinical research (and the quantification of subjective responses like 'hope' that certainly do not exist in isolation, to your point) is a vital part of the discussion and it was sorely lacking here!

Your post about teaching communication skills to medical students, and the inherent 'unnaturalness' of using actors as 'patients' in that setting to dramatize the breaking of bad news should be required reading so I'll post the link again here: http://wishfulthinkinginmedicaleducation.blogspot.com/2009/02/teaching-communication-skills.html

Dave - your point about false hope not existing if patients are fully empowered and engaged is one I'll never tire of hearing, and I hope to God you never tire of trumpeting. Thank you for providing an example of true empowerment and using it to advocate for something larger than self.

But true empowerment in patienthood ("e" or otherwise) I think includes embracing a great deal of uncertainty and accepting a true lack of control.

It comes down to this: We can control how we respond to our injury or illness, we can control how we interact with our providers (choice to engage, not engage happens *multiple* times in a care path, not just once), but at some level we cannot control the outcomes of our treatment. The great unknown (aka death) still looms, whether we recover from a certain episode or not, there will be another one.

There are only two certainties, birth, and death. Everything in between is negotiable. And nothing in between is static - not hope, not reality, not probability. Each microchoice we make provides us with a set of new potential outcomes.

We try our best to perform clinically and statistically relevant studies about how treatment works or doesn't work (evidence based medicine, anyone?) but at the base of it this is our attempt, as rational, logical humans who want control over our environs and dominion over our life and livelihoods, to put bookends or constraints on conditions and responses that often defy explanation.

Miracles happen in medicine all the time. So do mistakes. Often, it's luck of the draw which one you experience as a patient, if not both. The only real control you have is how you respond. And that brings us back around to hope, which is always the state where I choose to end up.

Jen, thank you for a thought provoking blog and all the comments.

When my mom was Dx with a serious and rare cancer, she was told she had virtually zero chance of living, and should under surgery, and consider radiation purely to help make the end less painful. 13 years later, she enjoys time with her husband of 65 years and her grandchildren. During these 13 years, she also faced and overcame a terrible brain tumor. Maybe some of her success was due to e-caregivers (giving my sister the doctor much of the credit here and my brothernlaw who actually performed the brain surgery), but I believe much of it was due to her intense focus on living and hope. She never gave up and was 'mad' that doctors had given up on her. For her, that unleashed some competitve spirit to prove them wrong...So while the facts and data can help inform decisions and actions, we do need to be careful as many point out, because the percentages don't always prove 100% predictive for the indivual...

...There was a moment when she thought why do the radiation if i'm not going to live anyway?...Why go through all the pain and side effects if i won't live anyway? Here's where that hope thing can come in...while some realism is necessary to be sure, zero hope can be deadly...Had she not elected to go through the intense radiation that she did, she might not be here today.... but I've always believed that her hope and will was perhaps her best medication

Ellen

read excerpts of this blog in a behavioral health day treatment patient group and asked questions like, "is there such a thing as false hope?". discussed the difference between expectations, hope, and wishes a la matty stepanek. patients responded well and participated in starting a "hope wall' on the unit. thanks for the inspiration.

Dear Dave, dear Jen, Thank you so much for your moving words...
My work is what saved me during the past years (being single without kids) and people like the 2 of you or like Maarten are the ones that keep inspiring me.

A view from the other side: Bad News | How a Doctor Faces the Task of Giving Bad News (http://distractible.org/2009/11/17/bad-news/)