The unwritten contract: Cancer cannot be beaten any other way

I had a patient this week that really screwed up his medical care when he experienced a predicted side effect of curative chemotherapy.  Despite clear instructions and access to every number my partners, my staff and I have, including office, triage, cell, and answering service, he did not reach out.  Day-by-day he lay in bed, as he grew weaker and multiple systems failed.  No one contacted me.  Finally, he sent an email to a doctor 3000 miles away, in California.  That doc forwarded the email to me.  I sent the patient to the hospital.

Did we rush to the emergency room, to salvage his life?  Of course.  Were there innumerable tests, complex treatments, multiple consults and an ICU admission?  You bet.  Did I patiently explain to him what was happening?  Yes.  Did I look him in the eye and tell him that I was upset, that he had neglected his own care by not reaching out and in doing so he violated the basic tenants of a relationship which said that he was the patient and I was the doctor?  Did I remind him what I expect from him and what he can expect from me?  You better believe it, I was really pissed!

The practice of medicine for most doctors is fueled by a passion to help our fellowman.  This is not a vague, misty, group hug sort of passion.  This is a tear-down-the-walls and go-to-war passion.  We do not do this for money, fame, power or babes, we do this because we care.  Without an overwhelming desire to treat, cure and alleviate suffering, it would not be possible to walk into an oncology practice each morning.  Therefore, just as we expect a lot of ourselves, we darn well expect a lot out of our patients.

I know that patient autonomy gives each person the right to decide what path they wish to walk.  I really understand, after 27 years in practice, that not everyone is going to listen to me and that I occasionally fail or am wrong.  I welcome a healthy debate and ongoing interaction about decisions.  In the end, the patient is in charge and I am just the guide. That does not mean that I am not going to try to do the best for every patient and that certainly does not mean I do not care.

Often when a patient makes poor and arbitrary changes in medical care, it reflects denial and an attempt to maintain control.  These are critical needs and must be respected. However, there is a line which if patient or doctor cross, tragic, unnecessary things occur.  The dread disease gives not quarter, even if I am tired, distracted, depressed or ignorant.  Cancer demands my complete commitment to its destruction.  It demands the same focus on battle from patients.

Therefore, when patients stray without good reason, I get anxious.  When they make bad decisions I get upset.  When they needlessly modify treatment, my head begins to spin.  When patients yell at my staff, while I understand their stress, I worry they will undermine their care.   And because this is oncology and because the stakes are so high, in the most direct and supportive manner, I will let the patient know.

I think one of the differences between young doctors and us old salts, is we how express such anger.  Newer docs are full of fresh vim-and-vinegar passion and so upset by the harm that is about to occur, that they raise their voices and may berate their patients.  Senior docs know, because they have fallen into the losing-your-temper trap, that this backfires.  Patients, already under stress, cannot cope with a shouting off-the-wall physician.  Experienced voices instead drop, words slow and we sit down on the bed and touch a hand, rather than pace and punch the wall.  Do not mistake controlled continence for calm or uncaring; inside we are seething, fuming, on fire.  I tell you, until the day we die, we really get pissed!

Beating difficult disease involves an unwritten contract between patient and doctor.  Each has their role, and the patient has much more to lose by violating that agreement.  If you do not like the treatment, make a change.  Let the doctor know, negotiate a new plan, change caregivers if you need.  But, once you set that plan, once the two of you decide on the steps to be taken, it is up to you and your doctor to each do their jobs.  Cancer cannot be beaten any other way.

James C. Salwitz is an oncologist who blogs at Sunrise Rounds.

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  • Marian P

    You might consider a palliative care consult to discuss this patient’s goals of care. Although you my be a great oncologist and passionately committed to patients ( and it sounds like you are), it’s possible that your patient feels worn out and has had enough. It might be easier for him to say that to a neutral third party-he may not want to let you down or disappoint you. Some oncologists I know are able to transition patients smoothly to comfort care, and others struggle because they can’t believe the patient doesn’t want to keep fighting. Also, and I think you are hinting at this, some people are simply unwilling or unable to follow complex regimens, especially in the face of serious side effects. Lack of cognitive and emotional capacity and good family support may be a reason to treat these patients with a more palliative approach. I am a palliative care physician myself (after any years as a general internist) and I have also helped care my sister who has AML and has had every treatment known to man, including allogeneic stem cell transplant. Frankly, she has been through hell and back and while I admire her for her courage and tenacity, I wonder if I could endure what she has.

  • EmilyAnon

    I’m an advanced ovarian cancer survivor of 10 years, albeit with 2 recurrences. Healthy my whole life, never in a hospital when this hit. I went through surgery with a gyn/oncologist, then handed over to a med/onc for chemo. I was very appreciative that my oncologist took control without asking me to make any decisions. (me? what do I know). If he would have asked me for my opinion on anything medical, I would have just said give me the same treatment you would for your wife, sister, mother, and I will be a good soldier. He never asked, he just applied his expertise and expected me to follow, which I did. I had peace of mind during my treatment,even through all the rough parts.

    I know things can change on a dime with this disease, but I will always be grateful to my doctor and truly believe I had the best care possible, without input from me.

  • kidsandliz

    Of course to flip what you wrote, the other half of the contract is that the doctor/oncologist acts (or even cares) when you call. I had shingles during chemo and my onc’s office refused to let me get a timely apt (timely in the sense of when you need to start the antiviral) to be seen so I went to the ER after their office was closed for the day (rules were to paid for an ER visit the office had to be closed) but my out of pocket was $150 ($40 at the onc’s office) so I could get an antiviral in a timely manner.

    Then there was the time my WBC was 0.5 with NO neutrophils. Took a 2 day fight to be seen and showing up without an apt arguing with the nurse (and they had not yet even called me despite the lab calling them the same day- I had picked up my results the next day and saw I had a problem) before I got neulasta 3 days after they were notified of those test results (they had told me I couldn’t get an apt until 6 days later to be seen about it). I didn’t go to the ER because I had already used up my 3 allowable visits. Then when I fired my onc I got fired from the entire system in retaliation. Considering that this practice had most of the hematology oncologists in town (the rest were out of network) this was a problem.

    Patients also make decisions based on a limited supply of money, a limited supply of allowable ER visits… speaking of ER – the three times I went no one from that big practice ever returned the ER doc’s call either…. and so we sometimes choose to gamble due to constraints. I did not, originally, go to the ER with a temp of 101.4 at 9 in the morning during chemo because I am a single parent, had no one to watch the kid if I was dumped in the hospital, couldn’t afford yet another ER visit since I had already used up my 3 visits, was given a onc apt 7 days out from calling I was sick and so I tried to tough it out. When I was too sick to navigate the grocery store when the scooters all turned out to have no charge I realized things were out of control and finally went to the ER (was almost too sick to drive myself there) and spent the entire night there with IV antibiotics – had to decline being admitted as I had no one to watch the kid)…

    By the way – it was the front office staff who were mostly responsible for making the call that I didn’t need an emergency apt – not that they had any medical training to do that. The nurse didn’t return my call, the doctor was never told, the office staff refused to give me an apt… I fired my onc over the office staff (they had two offices so I had been hoping to transfer to an onc at the other office where they might operate more in the patients’ best interest but I had not anticipated being fired from the entire system – had I known that would happen I wouldn’t have fired him, I would have just put up with poor care due to major office staff issues). This doesn’t explain the failure of the on call person to return the ER’s calls though…

    So this business of calling the onc’s office when things go south can be complicated. And I haven’t even touched on being sick of being sick so making bad choices due to just not wanting to deal with being sick (yes I know not a rational choice) or being too sick to care and if you have no one taking care of you (as a single parent I did all this alone including driving myself to and from chemo) to pick up on that you too sick/don’t have the energy to be making good choices, you are clean out of luck…

    Sometimes life is not as simple or straight forward as everyone would hope. In a perfect world my onc’s office would have acted in a timely manner with responding to problems and emergencies, I would have had someone to watch my kid, there wouldn’t be huge financial penalties for more than 3 ER visits in a year… as it happened in my case with the infection, things almost got too out of control for me to take care of getting care – but had my onc’s office actually seen me in a timely manner things probably would not have gotten so bad.

    Of course a patient getting furious with the onc’s office is likely to result in the onc firing the patient… As a patient we are expected to control our emotions and be reasonable, agreeable, put up with whatever garbage and unhelpful behavior that gets thrown our direction, etc. even if we are beyond stressed out and can’t handle one more thing, and we are also expected to tolerate MD temper tantrums, bad behavior, unprofessional behavior…

    All of us are only human and sometimes we just can’t cope/handle one more thing and so bad choices are made to the inconvenience of every one concerned. As I look back over those months of chemo I have no clue how I managed to continue working 40 hours a week (no sick days so that included while running that temp), take care of all the medical crap, family stuff… and not make more bad decisions than I made at the time.

  • penguin50

    Did you ask your patient why he acted as he did? Did you ask in a truly open way? You sound filled with assumptions that all favor your own angry point of view. You seem to assume that he was either “in denial” or misguidedly attempting to take “control” of his care and that he had “no good reason” for his behavior. But the answer might be far more complex than that. I am struck by the fact that this patient felt more comfortable contacting a different doctor far away, one with whom perhaps he felt he had a better relationship.

    If you think that a patient cannot tell when their doctor is as pissed as you claim to have been in a concealed fashion, you are likely wrong in many cases. Doctors do not cover their emotions anywhere near as well as they seem to believe they do. I laugh inside when my doctors speak in their “calm” voice, a voice that is invariably entirely different than the one they use when they are genuinely calm. I instantly realize they are probably angry or panicked or afraid to tell me their true thoughts.

    And no, not all cancer patients accept the military metaphor of cancer treatment as engaging in battle. Some certainly do, but please do not impose this on all of your patients.

  • meyati

    Sounds like the patient didn’t trust you and your staff. Perhaps when you gave all the clinic data to the patient, you had a staff member give the materials out. That person might not have given the contacts out, or did it rudely.
    I’m in a system that prides itself in having nurse navigators to handle things. I don’t have one. Except for the chaplain, I’m a pariah. I don’t know how this happened, except the nurse navigator stood and repeatedly said-”Face transplant, face transplant.”, as the doctor described facial surgery that included bone removal. The doctor left after telling me that the NN would be my contact, she’s make my appointments, etc. Ask her the questions. She came up to me and asked me if I was really considering this. I said -yes- Then I asked her about necessary blood work- She said the doctor didn’t order it, walked off. I considered that- I considered that the doctor hadn’t answered any basic questions either-like where would my body be between surgery and reconstruction-how long-I took in a biker grandson for the second visit. The grandson said that he wouldn’t let me continue with that doctor.
    I tried contacting the NN, but if she replied-it was to say that she’d talk to somebody about it-whatever it was. I got a new doctor that seems more grounded.and he makes sure that his nurses follow through. I went to radiation on my own-and had successful treatment. I’m being watched closely by a team that I put together in a very scientific way. I went over the list of authorized providers-and if I got a bad feeling I didn’t call them-if I got a good feeling-I called and made appointments. I certainly am not in system that I trust.
    I called and called to replace my NN after I gave up letting people know that she was shunning me. I was told that I don’t need one. If people don’t need one, then why do they go on TV with ads they provide NN make your cancer treatment better-and they have these NN for each patient?
    I ended up in the hospital-and the doctor’s nurses asked me why I wasn’t admitted to a ward for cancer patients that has medical problems other than cancer, instead of being sent to the regular hospital? Maybe because I got in contact with my PCP, and he wanted to make sure that I got adequate treatment. Maybe he did call the ward they have, and he was told that they didn’t want me.
    I do know that to get a good doctor, I sent a ton of emails to my NN and every supervisor that had a business card out, that I called the parent clinic that’s in another state, I called the local administrators, and that I went to the clinic and begged prettily- then sometimes moved to rage. Sometimes I kicked walls, and screamed and cursed. I finally used the ‘L’ words— LAWYER LAWSUIT- I basically went through radiation without a doctor. I finally got a doctor about 10 days before radiation ended and he fit me in. As my ENT says, He’s so very intelligent and kind. I’m glad that I met him. I’m referring patients to him now.
    Some how with the vibe science and cursing and kicking like a sailor method, I have doctors that didn’t know each other, but now do, and they respect a desire to have a quality of life.
    As far as me considering the bone removal surgery-isn’t a patient supposed to listen to what the doctor says-ask questions and consider the options?