Friday, August 13, 2010

Hope be not proud

I started to write this post to offer my appreciation to Kevin, MD, for posting a chapter of ePatient Dave's Laugh, Sing, and Eat Like a Pig, and for Dave and his publisher for graciously allowing anybody to read the entire chapter without having to buy the book. The story is compelling, and this particular chapter is especially so.

But that was before I read the exchange of comments on Kevin's blog. At least one commenter took offense at her perception that Dave was glorifying the role of hope in the treatment of cancer, and in so doing might be disparaging people who do not experience that hope, suggesting that they are somehow weak and inadequate. As you read through Dave's response and that of other observers, it becomes clear that he certainly did not intend to suggest such a conclusion. Indeed, by comment #15 or so, the exchange had gone on sufficiently long that the participants had come to a rapprochement on the issue, in part because of the respect they showed for each other's opinion.

During this last 8+ years that I have been CEO of a hospital, I have had occasion to talk to lots of people with cancer. Truthfully, I had never done so before because I was too uncomfortable to do it. To this day, for example, I regret not spending time with my good friend Leah as she was dying from breast cancer about 20 years ago. As I suspect is the case for many of us, I just found it too scary and uncomfortable. I now have started to appreciate what I lost as a result, and I also have learned how helpful I could have been.

Each person faces cancer in his or her own way. There is nothing right or wrong about the different approaches people take. Denial or acceptance is not a statement about someone's character. Having hope or not does not always come from an explicit decision to be hopeful; it often just happens one way or the other. Likewise, the spectrum from stoicism and strength to dependence and, yes, even weakness, are reactions that are unpredictable until you are actually faced with the disease. Too, how one feels can change over time -- whether minute to minute, day to day, or year to year. So, one thing I have learned is not to be judgmental about how a person responds to cancer.

The other thing I have learned, I think, is how to be helpful. I'm not talking about bringing over dinner or giving someone a ride to chemotherapy or other such logistical support -- although that is helpful. No, I have learned how to have a conversation with a cancer patient and hear what he or she needs to tell me. I have learned how to answer and, equally important, when not to answer. I have learned that a lot of the protective layers that we include in our day-to-day conversations fall away when someone knows that he or she might be dying.

I always wondered how people could choose to be oncologists. I used to imagine that it would be the most depressing field of medicine, in that a fairly high percentage of the patients die of their disease. I have come to understand the happiness that a doctor feels when he or she helps a patient beat the disease outright or gain several more years of life. But, I have also come to understand the deep connection that can occur between an oncologist and a patient, especially when the disease is terminal.

Several years ago, one of our beloved hospital employees lay dying with cancer. I went to visit her at the bedside and hold her hand. We talked quietly. She said she was concerned about how her children and grandchildren would do without her. Deeply religious, she was really wondering how they would choose to live their lives. I listened and then I said, "You have to trust that you have given them an upbringing that will lead them the right way. Now, it's time for you to stop worrying about them and just think about yourself." She sighed and smiled and said, "I suppose you are right," and I could see her body relax right then and there. What a gift we had given each other in that moment.

So, now I want to express my appreciation to Kevin, Dave, and Dave's publisher for giving us a chance to eavesdrop on one of those conversations. I want to thank them for giving us a chance just to witness first hand the bared souls of people who have faced this disease in whatever way is best suited to them.

23 comments:

Paul Levy said...

From Facebook:

Vicki: An important conversation in an age when there has been some popularity around the idea that personality or outlook can be blamed or praised for getting ill or getting well. I believe that places an additional heavy and undue burden on people facing illness. Thanks, once again, for a good post.

e-Patient Dave said...

Paul,

Thanks for getting why we wanted to do this excerpt. And thanks for your deeply moving post.

I ended up sobbing, because it brought me back to those days of not knowing whether I'd make it. I recalled all those thoughts from that Irving Berlin song, "When I Leave the World Behind."

You're right, sometimes what needs to be "said" is to listen for what THEY need to say. At the end of life, "when all is said and done,"
being heard is a special gift.

Anonymous said...

A post straight from the heart, with a great deal of wisdom. As one whose career was spent staring at this formidable disease in all its manifestations under the microscope, I believe that such judgmental behavior stems from magical thinking generated by universal fear of this disease - 'if I only (do, think, feel) xyz, I can
(beat, avoid, control) the uncontrollable.' Nothing could be further from the truth.

nonlocal MD

Jan Alexander said...

Paul, what a wonderful post. I too was deeply moved by it. Thank you so much for sharing your thoughtful words and compassionate heart.

I have faced two different cancer diagnoses in the past two years, and I certainly was in the state NonLocal MD describes: My mind would constantly say "if I only (do, think, feel) xyz, I can (beat, avoid, control) the uncontrollable."

In fact I still think this way: I tell myself that if I do my daily juicing, and my qigong, and take my supplements, etc., that I'm helping to keep my cancers away. Maybe I am and maybe I'm not, but these thoughts help keep me sane, so they are valuable for me in an of themselves, whether they are true or not.

I love Dave's familiar phrase from "Laugh, Sing, and Eat Like a Pig":

"Reality is what it is, whether we like it or not."

I was fortunate enough to be able to read a draft of Dave's book last winter (I'm the wife of the publisher, for full disclosure). The book helped me immensely to come to the conclusion that my reality was "Yes, I do have cancer" and also "No, I can't control that fact".

And acceptance of that situation, as I learned so well from reading the book, can be a powerful and healing thing. -Jan

BM said...

Very poignant, your advice to the dying employee concerned about her childred and grandchildren. Your words reminded me of Kahil Gibran;s description of the relationship of parents and children. Poorly paraphrased, the parent is like the archer's bow, the child, like the lofted arrows that fly free!

Thanks Paul

Paul Levy said...

From Facebook:

Ileana: I loved Dave's book. I was happy to see him posting it on Kevin MD. and then I read the comments: I stopped reading those comments when they seemed so unfair.

Perfect post and timing. My best teacher died this morning of lung cancer. Thanks, Paul.

e-Patient Dave said...

Ileana, thanks so much - one of the odd surprises of having a book out there is hearing from people I had no idea were reading it. It's almost eerie. I'm so glad it helped.

I experienced the seemingly "unfair" comments as people having their honest reactions. Again, my musician singer Suede's advice comes to me: everyone experiences their own way, and who am I to deny someone's reality?

Reflecting, I realized that the whole chapter said nothing about "my will helped"" - it said that hope is a resource. Then, at the very end, I quoted Dr. McDermott on the "incredible life force." I can easily see how someone might experience that unhappily.

Again, I don't think the comments were unfair. It was a learning for me. Who are we to tell someone how to cope with their own version of facing death?

e-Patient Dave said...

Jan, one tweak to your comment: the line in the book is "Reality is what it is, whether we *know* it or not." Not whether we *like* it or not.

Both true, of course, but different. :–)

Jan Alexander said...

Hey Dave, Thanks for the reminder of what the reality of your book really is, whether I know it or not... :-) -Jan

Attending MD said...

I think your experience is very similar to what most people face. In spite of being trained as a doctor, I didn't really understand what it meant to have or live with cancer until my wife got cancer several years ago. It continues to be a learning experience for me.

Another struggle I have is how to impart this information to trainees. I can see from some of their actions that some "get it" and others, while well-meaning, have no clue of what their patients are going through. Being diagnosed with cancer or having a loved one being diagnosed with cancer is a pretty tough way to learn to be a care-giver. The best I can hope for is speaking with them and trying to help them identify similarities between themselves and their patients.

e-Patient Dave said...

Attending,

Please consider steering trainees to that post and these discussions. And if you do, please let us know how it pans out.

Ileana said...

Paul and Dave,

You are so right, I keep learning from you: when somebody says something potentially offending, forget about the emotion and clarify the issue. Somebody (most likely everybody) probably just got it the wrong way. And yes, anger is part of grief.

Jim Siegel said...

Paul – thanks much for this post and for introducing more of us to ePatient Dave’s book, which of course I had to buy. Include me in those “many of us” when you write about your years of not visiting with cancer patients: “As I suspect I the case for many of us, I just found it too scary and uncomfortable. I now have started to appreciate what I lost as a result, and I also have learned how helpful I could have been.”

I happen to work with a team of board certified chaplains at HealthCare Chaplaincy in New York. You describe very well what they have taught me when you write, “I have learned how to have a conversation with a cancer patient and hear what he or she needs to tell me. I have learned how to answer and, equally important, when not to answer.”

As your chaplains at Beth Israel Deaconess would tell you (or maybe already have!), you yourself have developed the skill of “active listening” that one learns in clinical pastoral education. That’s the art of building rapport, understanding, and trust where an active listener acknowledges what the speaker indicates are problems and issues and responds in a way that shows that the listener cares. I was interviewing one of our clinical directors recently, and she said, “Patients need someone to be present, to pay attention to them. As the visitor, the challenge is how not to catch your anxiety but to be present, to hear, listen, to notice what’s going on with you.”

The more that health care professionals like you practice “active listening”, the more people will receive patient-centered care. Thanks for advocating for it.

Jim Siegel

Jackie Fox said...

This was absolutely lovely. I'd like to share what I've learned from losing my beloved brother-in-law at 40, and having friends with stage 4 breast and lung cancer right now: and that's to be where they are, not where you think they should be. And to remember that they're STILL HERE. I mean, they've been handed a nightmare deadline--but we all have a deadline--most of us just don't know when it will hit. It could be any day now, for any of us. ALl we have is now. Let's enjoy each other.
Thank you again.

jessica lipnack said...

As the wife of a recently diagnosed Stage 4 pancreatic cancer patient, I've been in the delicate thought swirl that you, Paul, spin and that you, e-Dave, have the courage and energy to devote a whole book to.

The bead on pancreatic cancer is that it's not survivable. Everyone who's heard about Jeff knows someone who's died of it. Various docs:
"I've had patients who've lived as long as a year."

"3-6 mos without treatment; add 4 mos with treatment." (Jeff's in month four since diagnosis.)

"With radiation, maybe 18 mos."

"I had one patient who lived 2-1/2 yrs."

Against that, the advice that Jeff should become macrobiotic from a Stage 3 prostate cancer patient; "read my book about diet and exercise," from a Stage-3 breast cancer survivor; and the commandment that he/we "have to have hope."

Implicit in the last (and certainly the others) is that hope means cure, hope means he goes to the twin grandsons' high school graduation.

Hope is a gem with many facets. For Jeff, hope means that he responds well to treatment (continuous chemo, high-tech radiation, invasive procedures, and so many IVs that there seem to be sympathy spots on my arms), that he can maintain a relatively normal life, and that he can learn enough about dying to do so consciously and with energy.

For me, hope is not about a shared future; it's about sharing the present; the hope that we can go for a walk (we just did); that he continues to respond to treatment; that he will know when it's time to stop.

Jeff has plenty to live for and he's lived plenty, not someone who's allowed in a lot of "if onlys." I have a lot of respect for how he's holding this, for the most part, without anger, with his own stamp of hope.

(and thanks both you guys for the opening to write about what's been largely unwrite-able)

Claudia said...

I think you have all done a great job at keeping this very mature and non judgmental - Great job all the comment-ers!

dl said...

Great article and breakdown on issues many of us would not take offense to. It provides an interesting perspective. I have always been strongly attached to hope no matter my challenges to date. I emphasize "to date". We HOPE to never stop talking about hope because that is truly the only way our brains can function and allow us to get thru life and enjoy life. Even when faced with death, as has been the case, I fund serenity and peace because I had to mentally manage the possibility as doctors informed me there was little to no chance of survival. Hope is what allowed me to come to terms with death and the fact that the only permanence in death was the permanence of being freed for ever. Of course people go thru anguish, anger, hate, and bitterness. That is normal and probably more normal than my reaction to doctors as they told me the news and wondered why I wasn't moved off my happiness and peace. I don't think they thought it had set in, but it had. Either way we win as humans. In death or in life, because it is all about life regardless of our limited point of view. Even when there is no hope inside of a person they are still longing for a sense of hope, a sense of peace, tranquility, free of anxiety, fear, & bitterness. So again when I say its all about hope, it is no matter our limited emotional states. Those states of emotions are significant only to us, but in no way do they alter reality. All the worry in the world won't alter the outcome of our lives or our loved one's lives. Its ok if you can't get beyond it. There are plenty of tests in life that I can't face in the same way I faced death. The larger the challenge the better I do. The smaller the challenge the more likely I am to crumble and thats even with me recognizing it as small. We are all designed to handle different things differently for a specific reason. Sometimes its to allow someone else to bless us with their gifts of being able to manage or help us manage our individual "hell". This in turn proves to us we can't go it alone and nor should we try. We are all connected. I'll pick up where you left off if you do the same for me and there is no reason for any of us to have justify or qualify why our reaction and emotions to different events are not identical and never will be. Just because you don't feel hope, doesn't mean its not there.

We don't move God with our belief or disbelief of Him or any of HIS gifts/tools. HE however, is forever moving us. That's the truest and most unselfish & powerful kind of love the Almighty gives us all with no exceptions.

e-Patient Dave said...

If there's anyone commenting who hasn't read the chapter Paul talked about, please do have a look. It's on the KevinMD blog, titled Facing Death, With Hope. It's solely my own experience of when I faced death, and how I personally chose to hope.

Most importantly, as Jackie said, it notes that everyone faces it differently.

Friend Jessica, I feel so deeply for you. In my case "hope" didn't mean I'll survive - believe me, I knew plainly what the odds were. (Bad.) I also chose to look for hope.

In a conference last month sponsored by the Dana Farber / Harvard Cancer Center, we (patients & oncologists) discussed the subject of false hope - docs are careful not to raise expectations such that people's hearts will be broken if death comes. (This is SUCH a difficult subject to discuss in blog comments...) I asked that we also consider the chance of false *no* hope.

Please see the story in that post of the magnificent grandfatherly doctor I met at a Christmas party, and how he handles it: "Can we save you? *I don't know.* But we will *try.*"

This is so personal... difficult to discuss here. I care for you all.

Mark Gebhardt, MD said...

Paul,

Nicely put. Sometimes all we as oncologists can offer is hope and allieviate the fear that we will abandon a dying patient. It is hard, but I think one of the most rewarding aspects of medicine. And when you win, you win big as I am now seeing when some of my survivors of 20+ years ago bring their children in for their follow-up visits. It doesn't get any better than that. People ask me why as an orthopaedist I went into oncology. Truthfully, I couldn't do anything else. Other people can take out menisci and replace hips.

Mark

stop smoking help said...

Paul - very eloquent as usual. Interestingly, I find myself having no difficulty talking to the patient in the hospital, but when my friend was diagnosed with leukemia, I struggled quite a bit.

It was as if when I had my white lab jacket and stethoscope on I was simply acting in a role with known boundaries of knowledge and professionalism. However, I found that in relating to my close friend, his leukemia was like this big giant elephant in the room that I just couldn't bring myself to talk about.

I was afraid of saying something that would either give too much hope or too much despair, so we just kind of talked about superficial things in the last year of his life. To this day, I regret not knowing how to relate to him as a friend with a horrible disease.

I find that a difficult task in general when my friends have health challenges. They look to me for help and reassurance, and I'm always afraid to give it.

Very difficult line to cross for sure. Thanks for the posting and thanks to e-patient Dave.

Cetus said...

There is a classic Onion article entitled "Loved Ones Recall Local Man's Cowardly Battle With Cancer." Lest I offend anyone with this reference, let me explain that I think it is an excellent example of comedy/satire engaging in truth-telling that you won't find elsewhere. It blows up the sentimentalized media portrayal of the "heroic" battle with cancer that, in my opinion, is a major source of some of the tensions underlying this terrific discussion.

Mandatory courage and hopefulness can become a sick kind of command performance that, again in my opinion, puts too much pressure on the patient to maintain a stiff upper lip to avoid becoming an emotional burden. I think this social expectation can have very hateful and damaging effects.

If you have particular sensitivities on the subject of cancer, it may be best to not link to the URL below. Please take it in the spirit it is offered.

http://www.theonion.com/articles/loved-ones-recall-local-mans-cowardly-battle-with,772/

e-Patient Dave said...

It's really interesting to see the various reactions people have to this discussion. I understand how upsetting the idea of death can be, and how that could easily trigger various strong reactions. I'm not complaining (as I say, everyone deals with it differently) but just look how much of this discussion is about things that simply are not in the chapter.

Again, I'm not complaining - it's just really something to see. Something similar happened in the comments on KevinMD.

olaoluwatomi said...

I like your blog! It makes you think about things you would not necessarily think about on a daily basis unless you are in that situation.
Ill check out the book!