Physicians: Improve the experience of communication

Physicians: Improve the experience of communicationOne of the toughest situations in oncology is the discussion about next steps, particularly when it comes to treatment of recurrent or metastatic disease. I believe very much that it is realistic to offer a patient the hope of cancer as a “chronic disease,” that treatment can result in disease stability, even though I cannot predict how chronic “chronic” is.

I was reminded of this during an exchange with Joan, one of my patients with cervical cancer. She had been living well despite metastatic disease for over 15 months, but had just relapsed after being off chemotherapy for six months. We met to review her scans, to determine how “bad” it was. Then we sat down to make a treatment plan.

“You have several options,” I said. “We could try combination chemotherapy again since you responded to it or we could use single agent chemotherapy. There are also clinical trials we could review, such as a phase I trial of drug xxx. Alternatively, since you actually feel pretty good—we could sit on things for the next few months and re-evaluate; gauge how slow or fast the cancer is growing.”

We launched into a discussion of each option—the side effects of treatment, the potential benefits of treatment, and the concessions she would need to make in her own life to accommodate a new regimen. She asked for some time to think about all of it, so we made plans to meet back in a week.

A few days later she left a message for me to call her back. There was a sense of urgency in her message, so I called her as soon as I could.

“I know you want me to decide, and thank you for all of the information,” she stated. “I need you to know I am scared, that I’ve read on the internet that this is terminal, and that I will probably be dead—sooner or later. All of my options are toxic, and I don’t know if I can decide. You need to help me here—I don’t want to make a mistake that might cost me my life. Just tell me what to do.”

There is an ideal that all of us in medicine aim to achieve—shared decision-making. It is the balance struck between physicians and patients of just enough but not too much information that will allow patients to feel they have participated in their care and had a say in what their next treatment will bring.

In a recent study published online in Cancer, Dr. Neal Meropol and colleagues share the results of the CONNECT study, which evaluated the impact of a computer decision aide on communication and decision-making among patients and their oncologists. What was unique in this study is that communication skills training (CST) was provided to patients and not to their physicians. Compared to those who did not receive CST, those who did had higher levels of satisfaction with discussions about the format of physician communication and quality-of-life issues. However, no differences in satisfaction emerged regarding discussion of diagnosis, prognosis, or treatment options. Despite this, participants who received CST felt they reached decisions easier and were more satisfied with the decisions they made.

Although this work does not represent the urgency to expand treatment options for patients with cancer, research aimed at assisting patients in decision-making is important. Physicians have come a long way in getting patients to understand that they are human; that we are not all-knowing, and sometimes we don’t have the answers.

At the end of the day, there will always be a patient looking for guidance and a doctor doing his or her best to provide it. If we can improve on the experience of communication, we should try.

Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.

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  • Suzi Q 38

    My sister was diagnosed with colon-rectal cancer a year ago.
    She went to a cancer treatment hospital, got help, took the rounds of radiation and chemo. Her surgeon called her a “complete responder,” but it was advised that she have the surgery anyway. She did.
    Now, she wants some answers, and her doctor, who is not very communicative, doesn’t give her the answers that she desires.
    He just says, “I don’t know…” then slowly walks out of the room.
    It has distressed her to the point that she wants to change doctors.
    I wonder how that would help. I am “on the fence.” Maybe her doctor does not what to tell her that she will die sooner than later.

    • drdondizon

      Hi Suzi Q 38, perhaps one of the worst things any of us can deal with is uncertainty. In your sister’s case, it’s about the future, which is hard for any MD to comment about really. Still, communication is at the heart of any relationship between doctor and patient. I think all of us are worse off when we assume what is meant rather than seeking clarity.

      Without communication that is mutually beneficial, it’s hard to have trust and without trust, there isn’t going to be much of a doctor-patient-relationship.

      Best of luck to you and your sister! D

      • Suzi Q 38

        Thank you.

        Part of my sister’s case is it may be that his culture is a bit more reserved (I have met and witnessed his demeanor twice). I am wondering if she is better off with an oncologist that matches her desire for increased communication during her exams.
        We have talked about her going to the local private hospital in her city that has a “cancer center” and oncologists there…but she is concerned if she ever needs surgery again and wants to go back to the teaching hospital for more advanced care.
        Sometimes, you can not change a doctor’s or any person’s personality. They are either open to questions and giving answers or not. She has tried to ask for a different doctor on staff, but they are hesitant to make any changes.

        My urologist was so taken aback by my questions that he suggested that I try another urologist on staff. At first, I was offended, but then I thought it would not be a bad idea.
        When I did so (asked for a new doctor )through the patient advocacy, I was told that he (the docto had to work through our issues first…apparently, his boss (head of that department) thought he had not tried enough and talked him into facing me again. I kind of like feel like I am in therapy.
        The doctor said I asked too many questions. I don’t think that 3 questions a visit is too many. Not all of us patients quietly accept. Sometimes we want to make sure we are getting care.
        We pay $300.00-$500.00 (Insurance pays) to a specialist for a reason. All popular literature (on TV and in magazines) tell us to have a more open relationship with our doctors regarding our care. When we do, many times, it is not welcomed.

        • drdondizon

          I am sorry your experiences (and that of your sister) have not been better. Patients are more than just “receivers” of health care but must be “participants”- very important for quality I think.

          • Suzi Q 38

            Thank you. You wrote a good article today.

  • meyati

    Oh lordy, lordy. I spent over a month of concentrated effort to get out from under the care of a jerk that didn’t give my options. When you have cancer- you shouldn’t have to put up with complete nincompoops. He told me that I had to have the right side of my face removed, including nose, eye, and bone. I asked how a wound that size would be cared for-he deflects questions by changing the subject. I asked several times-What would happen to my body while waiting for a prosthetic face? In 2 visits-he never answered that question. He did answer some questions on the second visit, because a male relative went with me and became aggressive to the so-called doctor. It would take about a year to get a new face.
    What enraged me the most was his hubris in assuming everything would be static in years to come-that he or I might not move to another area-that a tornado might not come, etc. When I was walking out of the office-he finally told me that radiation would give me 5 years, and radical surgery 10 years, then more surgery, then chemo, and then radiation. I met a man that’s on Erevidge-his surgery and prosthetic lasted for 4 years-it wasn’t his face. I filed complaints that this doctor was a sexist nincompoop that wanted to do surgery without any lab work to see if I was viable; He didn’t give me any options, never answered questions-I’m 71.
    I marched over to radiology. I sat in the office until the radiology oncologist met with me. He called the surgeon that did the biopsy to see if the bone was involved. The surgeon told him that I made an appt, and met with her about bone involvement. Radiology was workable. I went to my GP and he saw the jerk team leader hadn’t done any lab work, so my GP ordered the lab work. I filed complaints-sent Emails-where somebody replied that they’d talk to somebody. I went up in person-told them that I was tired of talking to the chaplain, talking to the quality of life counselor, talking to my nurse navigator, talking to the head nurse navigator, and the clinic director. and if I didn’t have the name of a new team leader, and appointment with my new doctor, that my next talk would be with a lawyer and the state medical board.
    I finished my radiation treatment 2 weeks ago-gained some weight. Wrote some of my recipes for the radiation clinic-and they had 5 others that gained some weight and 4 remained fairly active. I found a dermatologist-which I hope is better than the other ones that ignored the cancer above my lip.
    I have a rare cancer- aggressive atypical BCC. They did a biopsy, before the stitches were out, new cancer tumors popped up. In a fruitless effort to get a clear cut, the surgeon removed part of my nose and my lip-that includes a strip of flesh. My doctors know that I like to hear the good and bad. They know that I like to joke. We laugh together. We listen to each other.
    I’m driving myself and getting groceries. I eat with my family-I’m still on fairly soft food. I can smile and laugh with my family. I sleep with my 100 lb coonhounds and my grandson walks them now-they like 1-4 mile jogs.

    This is a question that I have asked my victims many times during my complaints-I started radiation treatment 12/27/12-Look at me now- I’m on my feet, I can talk-nobody is throwing up looking at my face-I can laugh and scream—What in hell would I look like after surgery? Where would I be in general and emotional health after that type surgery? I’m the only person in my family with cancer-but I’m not the only person in my family that’s being emotionally torn up from cancer.

    • drdondizon

      Dear meyati- I am sorry I am just reading this now. And I am more sorry that your questions went unanswered. One of my prior posts was about a doctor who had a rare cervical cancer; she had said it was the worst thing (I am parapharsing) to be told you are an “interesting” cancer patient. usually it means no one really knows what to do…
      Perhaps the doctors didnt know quite how to say, “I don’t know”. THose three words are the toughest for a doctor to utter at times.

      I hope your story is read by many; it is one of empowerment, of being actively involved in your care; too often it is easy to just “let” things happen. I think you are proof that “letting things happen” is not the same as doing things in one’s best interests. Best of luck to you, now and for your future. D

      • meyati

        Thank you for your kindness. Yes, my radiologist and my new team leader also used the word “interesting”. I was also told the tumor board found it very interesting. I smiled and said that I understood, and I just wanted the best quality life possible.
        I met my poor dermatologist since I wrote this. He’s young, and willing 2 do research. Poor man called me up a few days after my visit to see if I understood this type of cancer. I assured him that I did and explained a little in detail. I think he was crying. Good news, he did some biopsies and a cyst was indeed a cyst.
        Maybe this sounds stupid, but in 1566, Tycho Brahe lost his nose in a duel about who was the best mathematician in Europe. He had a silver nose for daily wear and a gold nose for royal court appearances. He killed the other mathematician. Some American Revolutionary heroes also had gold or silver noses, so I know that nose technology came to North America. When a doctor started dithering on the complexities of creating a prosthetic nose, I interrupted them and told them that doctors in the 1500s treated nose removals and made prosthetic noses, and I think that doctors in this century should have figured it out too.
        I’m not blaming the doctors, but I want them to know that I’m not impressed. They can help me best by being truthful and let me be me. I don’t care if a doctor says that he doesn’t know-that’s the truth- a good doctor will find out or give me a referral to a source.