A ridiculous story

The most remarkable interactions involve a doctor sitting with a patient and discussing bad medical news. Many physicians are gifted as they use observation, patience and intelligence to respectfully guide, gently educate and give support with compassion. When the news is hard, such caregivers create hope and comfort.  The following incredible true story, observed on an oncology unit, is not such an example.

Ellen is a 57 year old secretary who suffers from lung cancer. The disease was originally treated with radiation and chemo, then surgery and subsequently with multiple rounds of chemo, two more courses of radiation and recent brain surgery. The cancer has spread to the other lung, her spine, her liver, the lining of her spinal cord, her adrenal glands, lymph nodes and, just to be obstinate, the lining of the original lung.

She sits sagging on the edge of a messed hospital bed, saline drips into a serpentine IV catheter in her arm, penetrating skin which is a map of bruises, as oxygen hisses through nasal prongs worn uselessly on her forehead, because it gives her nose bleeds, dangling oversized slippers into which are squeezed pillow-like feet.

Her doctor stands at the foot of the bed, while Ellen faces the pulled curtain just 2 feet away. They have 90-degree discordant eye contact, he of the chart, and her of the dark red-stripped pattern of hanging cloth. However, today she has courage. She knows things are worse.  So, Ellen has decided to ask.

“Doctor, how am I?”

“Don’t you know how you feel?”

“I mean, how am I doing with the cancer?”

“You are doing fine.”

“But, I feel terrible.”

“Its OK.”

“Why do I feel so bad? What is happening?”

“Well, it’s just the cetuximab. And the enterococcus. And the macrocytic anemia. And the clostridium difficile. And the vagal effect of the opioids. And radiation enteritis. And anasarca. Decreased EF.  Increased intracranial pressure.  Its normal.”

“I don’t feel normal.”

“Its normal for cancer.”

“Doctor, the cancer has spread. I’m getting weaker. Is this the end?  Is it terminal? Am I going to die?”

“Why do you ask?”

“I want to know.”

“Why don’t you let me worry about that.”

“I need to know.”

Silence.

Silence.

The doctor stares deeply in to the mysteries of the chart, which holds all answers. He clears his throat.

“Well, Ellen, let me put it this way. In 1945, the President of the United States was Franklin Roosevelt. A great President. Got us through World War II.  In April of that year, he died of high blood pressure. Simple hypertension. 220 over 130, just before he died. Ruptured an artery in his brain.  Now, if he were President today, we would just give him a pill to take. No one dies of just high blood pressure anymore.  So, medicine is always changing.”

Silence.

Silence.

Furious scribbling in chart.

Sputtering hiss of oxygen.

The IV beeps.

Ellen stares at the pattern.

The doctor walks out the door.

23 Comments

  • Liz
    Yeah unfortunately there are doctors who don't know how to handle conversations like this... hope I don't ever have one. Hope med schools (and residencies) have this on their agenda to try to fix. Some people "don't do death" well. Perhaps they shouldn't specialize in oncology. I would imagine this is more common than one would hope.
  • Alyce
    This is when she needs to ask for another opinion. Hopefully she has a someone to help her with the Doctor. This is why we all need advance directives. This is a very sad story and one would hope that doesn't happen to often. My best friend died of lung cancerand she would ask no questions. Thank God her husband finally did.
  • Sad story. One of many I have heard. I wonder how this physician would like to be treated, certainly not like he treated this patient. Sad.
  • D Someya Reed
    This is a perfect example of why we ALL need to be intelligent consumers of the medical industry. If you are taking medications, you should know before the first dose what to expect...good (health improvements), bad (side-effects) and long(er) term effect on YOUR prognosis. If procedural issue such as surgery...what improvements can be expected, what losses can be expected and the same long(er) term effect on YOUR prognosis. Anything less than this is not compassion, is not offering or preserving hope, not even an oversight...it's simply a lie (of omission). If you choose to study up yourself and ask questions of your doctor - great! If you don't, then you need to ask the doctor to explain it and in non-medical jargon (they can do it...no doctor got there by being stupid). If any doctor gets mad because you ask (or feels you are asking more questions than perhaps he/she is comfortable discussing) then maybe that doctor is not the right one for you. Teaching how to have these conversations in medical schools is not the only way to effect change. Patients (and their choices) will have incredible sway. My wife and I had a couple of doctors reminiscent of this one. Neither of us lasted long enough to allow them to say something as condescending (perhaps demeaning) as “Don’t you know how you feel?” Makes me angry all over again just remembering them. Sorry for the (but thanks for letting me) rant.
  • !@#$! Speechless for several moments. "I want to know" sounded pretty direct to me. I can't imagine allowing the doctor to stay in the room after "why don't you let me worry about that". But even more: If this is 'normal for cancer,' then is he torturing all his patients just because he can? I recognize that in a long course of treating metastases this situation is not uncommon, but if it becomes 'normal' we are doing more than a few things wrong. I hope Ellen found someone to tell her the truth and help her process it.
    • Re-dic-ulous.....
  • Mary
    I had a oncologist brush everything off, because I was to detail oriented, whereas; he looked at the bigger picture. I knew exactly what the bigger picture was-I was diagnosed with a rare atypical incurable cancer. He wanted to experiment on this. I was locked into the cancer clinic for 3 reasons-it is one of the best in the state; this was the clinic that is tied to my health plan; I don't have the money to leave the state or to get private care. I don't know if any of you have looked at advanced directives, but if you don't name someone to be your agent, they appoint someone to do it. Then they have a clause where your directives can be changed by your agent. They didn't like the way I filled things out, so they said my directive was medically confusing and therefore illegal. I took my agent in with me, and they got mad because I filled it out the same way, then they started bullying my agent into talking some sense into me. Points of conflict: the age of my agent-he's my 26 year-old grandson. That I do not want to be tubed for anything for more than 3 days-I said if this is not a legal option, why is it listed as an option?; That I want to be doped out of my mind-again why is maximum painkiller an option on their form, if it's not legal? In this state and you have DNR. and your caretaker calls 911, you will be revived. This happened to a friend's father. He slipped and hit his head, and was bleeding out. He died 8 months later in a nursing home. The family kept complaining, bringing in his directives and DNR. He went directly from the ER to the home. It didn't matter that he had an agent and a directive, he became a ward of the state when the EMTs were allowed into the house.. We've heard other stories like this. I've told my family to pack up the hounds and drive to my X in Texas. My family was horrified to hear this about the EMTs. We all thought that I'd be taken to the ER to pass, or spend a few days with some pain meds.
  • Angela Evans
    It is sad,disappointing,and as a R.N.,a patient advocate,makes me somewhat angry that we have physicians who still put end stage cancer patients through needless pain & suffering,while keeping them in the dark about their true condition instead of being honest with them and offering them palliative care which would make their last days more comfortable.
  • Just callous and indifferent..almost mocking. I have met many doctors like this, and RN's etc. Brings a lack of respect from people for the medical profession. So sorry for Ellen. There was a woman about 38 going through radiation and chemo when I was being treated with radiation for DCIS...(I think), I felt so bad for her because of the problems she was having with her esophagus...her only coping tool, cigarettes, gone...
  • Keep these stories coming. If you can get your colleagues to read your blog posts, it might do some good. Some of the comments are disturbing. I have very clear end-of-life directives, but it seems that even those are ignored in some cases.
    • Mary
      How about the administrators that claim to running the show?
  • Mary
    I am going in every year and renew my DNR and my directives-Keep copies of them in my safe deposit box. That way nobody can doubt what I want. I hope that this method can create a law suit if the directives aren't followed. One is that I'm kept clean-and I was immediately told that being kept clean could be very painful. This was by a Quality of Life counselor at the cancer clinic. While they won't let me see a hospice,I can understand that patients shouldn't be bothered with people tramping through. That patients aren't on exhibit like in a zoo I've already been told that camera phones, cameras, and other camera devices aren't allowed in side one. This makes me suspicious. It took me about 6 weeks to get a new oncologist. I found out then that nobody is responsible for anything. The radiology unit is the exception to that. What scared me is that when someone was failing, had a new intestinal blockage, too much fluid built up in the stomach cavity and was pressing against the lungs, etc. families were taking their loved ones to radiology instead of to the oncology unit. I watched arguments with the radiologists and staff were telling them that they didn't have the facilities to do that because it wasn't their designated job. When part of a family marches up to the front desk and starts crying that radiology was the only place they and their loved ones were treated right, etc. you can't help but hear it. I have nothing to do with the VA, but the VA told my son to keep me home, and make the health program provide a palliative nurse to come to the home, and watch the nurse to make sure that none of my drugs and jewelry are stolen. What Dr. Salwitz has been talking about seems to be systemic problems. I know that at the visit where my grandson went up with me with the bad oncologist, a nurse pounded on the door. She was begging to start an IV with an extra small needle, because a frail patient's veins were collapsing. He just stood there. She waited, and waited. Then she stated the problem again. This happened several times. Then I started mouthing the words-Start the IV. Start the IV. I looked and my grandson was doing the same thing. The nurse actually turned and looked at us. She asked the doctor again. Finally he gave her permission. My grandson and I were completely shocked by his next action. He turned to us, and bragged how important and busy he was.
    • The only reason medical professional can be important is if they are doing the job..what a goofball this doctor is...
      • Mary
        And people had a hard time when my grandson said that he wouldn't allow that doctor to care for me, and went to the desk and requested a new doctor. I was finishing radiation without having a doctor over a month later. At that point I threatened to sue. One day I even pounded on the desk and cussed at the top of my lungs. I have some good doctors now, but will I still have them if my cancer comes back with vengeance in the future. Nobody can answer that, as we can't see the future. I just try to do the best that I can for myself and my family each day. I trust my family, but I find it hard to trust this medical system.How could it have a jack like the one that I just talked about? Why would it take way over a month to assign me to a new oncologist? I was told by the radiologist that he went up to the tumor board, and the date was switched. My new oncologist asked me if I knew why the radiologist didn't show for the tumor board. Then the Jack thought that d idea to tell us that he had enough power to rig the tumor board by excluding the radiologists. I knew that since the early 1930s, a radiologist is supposed to be there. I called radiology on my own, made an appt. TG for EHRs. I went to the biopsy surgeon, got copies and went in on my own power. I didn't have to ask questions, as I told him how this spreads, what the surgery recommendations were, the different forms, etc. Then he made a nice presentation of why he could help me, and possible-more than likely-side effects. Then after I agreed on this treatment, he said that he heard that I was raising hell in oncology. I told him that they were f idiots. He smiled, as I ranted about tumor board standards, idiots that can't make up their mind to answer a "YES" question, etc. I did ask him one question-I told him that I thought that I was in stage 2, because--was I right? Nobody had even staged me. stage 2 T.
        • James Salwitz, MD
          From all of your comments I see that, even more than my "ridiculous story," this is not an uncommon experience and we do indeed have a long way to go. What bothers me the most is that the doctor I wrote about, and many that are mentioned in readers comments, are obviously clueless about how to connect to another human being. I'm not sure if it is a matter of giving doctors "permission" early in their training to be human and therefore practice humanism or it is just that these people should be repairing cars. Fortunately, I do know many doc's that do "get it," but as long as patients continue to commonly experience cold medical care, it is not acceptable. jcs
          • Liz
            Unfortunately doctors are human like the rest of us. They go into medicine for a variety of reasons, not all of them humanitarian. Their "emotional intelligence", compassion, etc. are all over the map. Med schools admit students on MCAT scores, GPA, and courses taken. You don't test for interpersonal skills. Would help if someone figured out how to identify people with "talent" in this area and then make a "minimum cut off" in this too. I had a doctor tell me that how she shows she cares about patients is by researching their diseases. No that is showing you are competent. Showing you care requires interpersonal skills (this is the twit who when she told me I had breast cancer again asked in irritation why I was crying - a few tears were rolling down my face - and told me I knew it was no big deal as I had had it before). Unfortunately when you have people this clueless I am not sure you can salvage them. You need some "talent" in this area as well so you have something to develop.
  • gopja
    There are a lot of elequoent recalls of many experiences here. I can only come up with one word........... and everyone 'has one'.
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  • Linda Dolan
    Check to see if your state has a POST form. Many if not most states have passed this law. This is a new idea sweeping the country where a medical order, legally binding, will direct your end of life care. It is a binding order in the hospital, home, nursing home, and ambulance. If EMTs respond and are handed a POST form they will not do CPR. A living will is a wish list,a DNR is only good for the hospital. RE: POST Walthall Dr. Gerald to: 'Linda P Dolan' 10/22/2013 03:25 PM RE: POST Walthall Dr. Gerald to: 'Linda P Dolan' 10/22/2013 03:25 PM Check to see if your state has a POST or MOST law. this is a law creating a medical order for end of life care. It is a binding order in the hospital, home, nursing home, and ambulance. If EMTs respond and are presented with a POST, they must follow it. Most states have this law and others are considering it. If your state does not have one, contact your legislators. http://www.iupui.edu/~irespect/POST.html
  • Mary
    Doctors aren't the only ones to blame. Administration bears a large share of the blame. Surely some nurse or aide noticed the condition of Ellen, but had negative reactions when she talked about it. Whoever feared the loss of their job or a poor job review. For myself-I want to try to find out who is in charge of this mess, why they don't even have a procedure to change a patient's head oncologist, but I'm scared that I'll be kicked out of Pres healthcare. I'm scared that I'll be treated cruelly or that I'll lose the excellent doctors that I have. While I didn't have an oncologist-only radiation-the oncology radiologist sent me to one of the counselors, thinking that I would get help. He asked me if I had an oncologist yet, I wasn't crying on his shoulder, as it wasn't his clinic. Everybody in his clinic found me to be pleasant. About every 3 visits, they'd tell me that it's so nice to have a cooperative patient that showed up a bit early, said thank you-please-and wasn't scared. Once they had some trainees in radiation, and they started speaking to me curtly, in a loud voice. The regular tech told them to stop, that I wasn't like the other patients, as I was nice, funny, intelligent, calm, and did what I was asked. Anyway, the social worker listened and told me that since I was so unhappy with Pres- why don't I just leave. It took everything I had to keep from crying or punching her in the face. Apparently, she then went around telling everyone that I had 'problems'. Someone even told me that I have a spiritual problem. I didn't complain to my PCP either, as it wasn't in his province-not his job or area. How compassionate is it to tell a cancer patient to leave during treatment? I'm on medicare, so I can only change during the Medicare enrollment period. I wasn't having trouble with my other Pres doctors-only oncology--- I can understand that people are very scared when they are told they have cancer. I understand that people take the diagnosis out on the doctor, but this system says that you can have a second opinion. Considering that-why wasn't I allowed to have a second opinion? If a person still wants a different doctor after 2 weeks, a large clinic should be able to do this or help the patient to get care elsewhere.
  • Marty
    For Mary (and everyone else): update your advance directives regularly, but do not--DO NOT--keep them in your safe deposit box. If you're that ill you won't be able to retrieve them. Give copies to your primary care provider, your family, your hospital, your landlord, anyone you know will be able to put their hands on them in an emergency. Advance directives do you no good if they aren't immediately available. See Paula Span's article in the New York Times, October 17, 2013, "Where’s That Advance Care Directive?": http://newoldage.blogs.nytimes.com/2013/10/17/wheres-that-advance-care-directive/?ref=health
    • Mary
      One is supposed to be in my EHR, but a new doctor couldn't find it last week-1st visit. I carry a DNR with me. When I was young, I made arrangements with the military, and they said that they'd respect it. They had it on front of my military health records. Now that it's law, I don't find the same respect from the medical community. I'm not and never have been depressed or suicidal. Vietnam was going on there was lots of death. The outcomes from accidents were poor. I had a friend that slipped at her swimming pool, and was in a vegetative state. As a friend, I watched the agony of her husband and young children. I had friends that came home in comas or paralyzed, and saw what it did. I did not want my children or my husband to go through that. I wanted him to be free to move on and have a life. Not only do you need to update your DNR and the advanced directive. you need to carry the DNR with you. Helpful people recommend your wallet or purse, as cops and EMTs go through that. if I didn't have so many freckles, I'd get it tattooed on my forehead and arm. You need to remind your family that you have one, and where it is. The few medical staff that agree that I have a right, told me to make as many copies of each as you can, to pass them out like candy. I keep copies in the glove box of each vehicle. My son is listed on my safe deposit box and has a key. We have a bulletin board with important papers, and I have copies of my DNR and directive up there for the world to see. Several medical staff people said that DNRs shouldn't be allowed, as people commit suicide. I said, "Excuse me, but I don't need your or Presbyterian's permission to commit suicide. I have been quite capable of doing that on my own for quite sometime."
    • Thank you!

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