Light in the dark

Her name is Joann; she has cancer.  As that disease goes it is not much, probably curable, one of those “if you have to get cancer, this a good one.”  Still, she sits across from me, her skin pale, eyes tight and she rhythmically grasps her cold, moist hands.   She fails to gain any comfort from the knowledge that she is going to be OK.  Why?  I have not told her.

His name is Eric; he has cancer.  As that disease goes it is bad, incurable, one of those “if you have to get cancer, do not choose this one.”  He sits across from me, rocking slightly in the chair, making fleeting eye contact and tightly gripping both knees.  He fails to gain any comfort from the knowledge that there is still a lot we can do and that we will control his pain and I will take care of him.  Why?  I have not told him.

Recently, a new patient sat down with me.  She did not know my style or my belief in direct patient empowerment.   She felt the need to educate me on how she wished to be treated. After I finished taking her history and doing a careful exam, but before I began teaching her about diagnosis, therapy and prognosis, she looked me in the eye and said.  “Doctor, whatever you do, you have to tell me everything.  You have to be honest with me.  I need to know, so I will not be scared.”

Doctors spend a lot of time lying to people.  Perhaps, that is the wrong word.  Doctors spend a lot of time holding back the truth and doling out bad news in small pieces.  We may plan to eventually tell the complete story, but time passes, new events interfere and our patients never gain a full grasp of what is happening.  We do this out of love and compassion, not wishing to cause pain or overwhelming anxiety.  Nonetheless, by leaving much unsaid and in the dark, we cause fear and amplify suffering.

There are two basic facts we need to understand and incorporate into medical practice.  The first is that most people are extremely strong and capable of coping with the worst medical news.  It is not that anyone will be thrilled to learn about a dire prognosis, but with support and time, we can handle it.  Doctors and families often underestimate the inner strength of patients.  We are so concerned that someone we care for will give up, we give up on them.

The second is that people need to know the truth so that they can concur fear and plan their lives.  When the unknown is rapped in sterile halls, sharp needles, stern physicians and stamped with the word “cancer,” terror has no stronger name.  Given a complete picture of what is happening, patients and families can organize their emotions and plan lives to cope with what is to come.  In the absence of an understanding of reality all they have is thin hope, and that makes for a flimsy blanket.

 

Now, to be clear, the communication I am prescribing is not:

“You have cancer.  You are screwed.  Get your affairs in order.”

 

I am talking about systematic, compassionate, supportive education:

This is what we have found. Do you understand?  This is the diagnosis.  Do you             understand? This is the likely prognosis. Do you understand?  These are the             treatment alternatives. Do you have any questions?  In addition, where             reasonable, it is vital to include the extremely rare statement; “you do not             have to do anything, it is up to you.”

 

A back and forth patient conversation, which depending on the patient’s comprehension and need, may occur over several meetings.  The patient needs to be informed and kept in the loop regarding changes, both good and bad.  The doctor is the learned advisor; the patient is in charge.

The truth shall set you free.  This is freedom from the unknown, freedom from pain and freedom to live your life as you wish.  Doctors, caregivers and families must empower each patient with the knowledge to guide their own futures.  With compassion, they can walk through the blackest night.  It our job to light the darkness.

 

14 Comments

  • I have Stage IV, Nasopharyangel carcinoma widespread to the bone; I wish to concur and validate every single point that you make. Out of love and compassion, doctors do lie; yet I want it all, in detail, down to the last twenty-second side effect and more -- the good, the bad, and the ugly. I can handle it. My wife has been the quarterback out of default; she sees it all from diagnosis to the deathbed and all stops -- sticks, scans, surgery, chemo, radiation, pharmacy, etc. -- in-between. We need to know; to anticipate, plan, make every moment count. Thank you Dr. Salwitz. David B. Oliver
  • Liz
    I think you also need to take into consideration how someone deals with stress. I deal with stress with information - the good and the bad. My mother deals with stress with best case scenario beliefs combined with denial/serious downplaying of the potential negative (now mind you none of the rest of us in the family inherited that tendency so you'd be dealing with her one way and the rest of us another way)… I know it makes me mad when I ask for information and what I get back is hope/optimism… There has to be a match between what a doctor is capable of/prefers and what the patient needs/wants. I do not believe that all doctors are capable of all kinds of responses - they are human too. I am beginning to think that one way some oncologists deal with all the death and disaster they see is to focus on the optimistic/hope side of things - not for the patient's needs but for their own.
    • Liz
      PS I also think that some doctors have no clue how they can respond to patients based on their own needs… Medical students need to think about this prior to even being in the situation where their private fears/their needs are triggered. Self awareness might help a bit (although recognizing this kind of stuff in yourself and then responding appropriately aren't necessarily a tightly coupled event)
    • meyati
      What I hate is deflection, when you ask a question. Like you ask-how long would it take to get a prosthetic face, and they say-You'll look exotic with an eye patch. This was really said. You ask to speak to the clinic administrator, and they say--You are a unique and special person. We value you; don't ever doubt that you are important to us--blah, blah, blah----I've learned that is the time to run or crawl screaming out of the clinic. When the 3rd person parrots this sincerely, while looking into your eyes, you have to know that it's ploy to deflect you and control you psychologically. They are treating you like a 3 year old-- Oh, you're so good, lets' go get an ice cream (So you can forget that I just abused you). I'm not a 3 year old, I will not be disrespected. The last person that started saying this was interrupted, and I told him to stop treating me like a 3 year-old, I want an answer to this question. If you don't know-tell me. Then tell me who knows
  • I learn so much from your eloquent, writings. As important, you exemplify the best of 20th and 21st century doctors. May you care for patients and write for years to come.
  • Great post! By the way..I was told to get my house in order....whatever that was supposed to mean...my answer was that I would try and get my housework caught up. The really scary comment that was made to me after completing treatment and being in follow up was, when I became pregnant. The comment was.."I get the baby". Like that one.
    • meyati
      Well, I did put up new blinds yesterday, so I guess that I'm getting my house in order.
  • Thank you for this simple and important advice. Patients do need the truth and we also know when we are not getting the truth but being placated. When the only information my initial hematologist would give was "this is curable" it was scary because I was left with the feeling I was not being talked to as an individual but a diagnosis. When I changed to another doctor and was able to discuss my options, I was better equipped to handle the entire situation. We do want the truth, all of it.
    • meyati
      The truth and right to the point-well said
  • I am sure that it is a real balancing act to be a guiding light for cancer patients. It may be more comfortable to not discuss the negative details of the illness, or easier to play cheerleader and only talk about treatment successes. But to honestly guide the patient with knowledge, courage and empathy that takes much more effort and care. Thanks for your efforts Dr. Salwitz and sharing your light with us.
  • meyati
    Guess what, my oncologist is listening to me! I've joked about living a "Vampire Life style". He's also heard me complain how worthless the HMO's PCPs seem 2 B. He also knows that I have an active life style-I take my coonhounds out for dawn patrol, do yard work on the shady side in the dawn and dusk, etc. Yesterday my EHR notified me that I'm now deficient in vitamin D. I see Dr. B on Monday. I'll take in my vitamin D supplements, etc. Dr. B is from West Africa. I'm rural white Southwest-redneck. He understands my communication style better than most American doctors of any race. Last visit when he asked me how I was doing, I joked that I can't understand the HMO at all-it's almost like a crap shoot. They don't need a federal death panel with PCPs like this. It has really great specialists, like you, but the PCPs are idiots-the one I have now is less of an idiot--but he couldn't find his rear end if a bell was tied to it. I have thyroid problems, but instead of dealing with reducing my THR, so my BP can go down, they want to give me BP meds. This one actually figured out my thyroid needed 2 B reduced-then he started the darn nagging and nit picking, instead of giving my body a chance to heal somewhat-he got my BP up from 120-140 to about 200+. It seems that when BP steadily climbs @ each visit-and you and the patient are arguing, that the arguments and the subject of the argument is a great stress factor? That's a form of communication. So, Dr. B called my PCP and told him to accept the new BP standards for elders. My BP went down from 180-200+ to 140 @ intake. It was fear of arguing-being bullied, nagged-and god knows what. I had directly told my PCPs and their nurses that they were making my BP jump up, because I don't feel safe with them. That I'm a type A personality, and I've been told that I have high adrenaline levels by military doctors. Obviously, Dr. B is taking over more of my primary care through lab work. I greatly appreciate it. In Feb. I had a sinus infection that was quickly eating out the surgery sites in my nose-I could feel them when I put in Aquaphore-I also developed a possible nodule inside of my nose, and my nostril was closing up. I contacted my oncology radiologist that I had an appt the following day for my thyroid, but I'd have the PCP look at my nose-I hoped that antibiotics would clear it up. I'd let him know what happened. (Scan was in my freaked out mind.) I went in to the PCP-he did a lack luster nose exam-didn't even check the good side of the nose-I asked when I should come back for a follow up--he said that I didn't need one. I asked him how many patients came in with possible cancer nodules and open surgery slits inside their noses? He said that I'd have follow up with the nurse. I told him that was unacceptable-and explained that my oncologists expected him to be their eyes-did I need to start bringing Emails from them? My Oncology Rad contacted me about how the PCP visit went. I complained about the lack of interest. When I went in for the follow up- the PCP examined both nostrils and seemed invested in the exam. He also made a reference to my radiologist and oncology clinic. I reported to the onc radiologist that all seems well, and I noted there seemed to be a great difference in the PCP's attitude. In this article, you are talking about verbal communication, but there is the physical communication. What good is talking, if there isn't some action to go with it? I know that everything doesn't require an action, but it's one of the things that creates trust instead of despair. My oncology radiologist is first American born generation of an Indian family. I'm almost to the point of asking the immigration status of a doctor, if I need one. I had a 2 month fight with administration to get rid of my first oncologist-(WHITE and very American). Emails, letters, phone, and in person cussing and wall kicking when it was obvious that polite and logic wasn't working. Finally, I said-SUE-File with state health department and hospital associations and my congressman. I kept a log and kept all Emails. My oncologists realize that I like to face things head on-but I like to joke about it as a way to not be confrontational. Reading your article makes me appreciate these 2 and my ENT even more. It didn't take several visits. We got it hammered out on the first visit-and they were so nice and honest that I didn't need to be rude at all. I was told that I talked like a cowboy-I told them that I rode bareback bronc-called a 'goon'-. I was unusual for a woman, as I used only one hand-most women use 2 hands. They stared, and I told them they could examine my right shoulder blade, as around the edges-I have gristle-scar tissue bumps- like spot wielding-because my shoulder blade has been pulled off or loose so many times. These 2 smiled, and they listen to me. They don't make me beg, they don't lie verbally or physically, they don't lie through deflection, and they've never asked me to trust them. I can keep my issues short and to the point-because they don't interrupt me, ask stupid questions that throws everything off track. Then I can give them my full attention and respect. I feel safe with them.
  • Angela
    As usual the column was great & educational. In the beginning of the post you mentioned two patients that you did not the tell the pt all the info. Why not & did you ever tell them them the info? Why did you withhold the info to begin with? Thank you very much!!
  • ciccone
    i imagine this a misprint. "concur fear" Some can handle it. Some cannot. All can handle it with HOPE. But HOPE is a misconception. We all die. HOPE that our diagnosis is treatable, "curable" leaves us to live on for another, perhaps as devastating diagnosis. So while I agree with the writer, remember, HOPE is ephemeral. It also has an end. The best we can do is love our neighbor.
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