Failure to Communicate in Oncology

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kira66715
kira66715 Member Posts: 4,681
edited June 2014 in Lymphedema

So, for the last three years, I worked in rad onc and over and over again, I saw breakdowns in communication of the patients' oncology team, and fragmentation--the surgeon just took care of the scar, the onc just the blood count, the rad onc just the burn, etc.

I think it's worse with LE, as no one tends to "own it", but it's part of a common problem.

So, this was on cancernetwork.com

Study Highlights Communication "Breakdowns" in Cancer Care
By Anne Landry | April 30, 2012
Executive Editor, Oncology Nurse Edition

A multicenter telephone-interview study has found that cancer patients often perceive that communication problems with healthcare providers have contributed to a breakdown in their care, but very few formally report their concerns. The study, a project of the NCI's Cancer Research Network's Cancer Communication Research Center (CRN CCRC) was reported online first April 16 in the Journal of Clinical Oncology.
Patients often perceive that communication problems with healthcare providers have contributed to a breakdown in their care

Lead study author, Kathleen M. Mazor, EdD, is codirector of the CRN CCRC, associate professor of medicine at the University of Massachusetts School of Medicine, and assistant director of the Meyers Primary Care Institute, in Worchester, Mass. Dr. Mazor's coinvestigators are from the Meyers Primary Care Institute, the University of Washington School of Medicine, Group Health Research Institute (the research arm of Seattle-based Group Health Cooperative), and Kaiser Permanente Georgia's Center for Health Research.

The investigators conducted in-depth telephone interviews with cancer patients from three clinical sites. Patients eligible for the study were those who felt that something "went wrong" during their cancer care; that the event might have caused, or did cause, significant harm; and that the event could have been prevented. The interviews focused on patients' perceptions of the event, of its impact, and of clinicians' responses to the event.

Of 416 patients queried by Dr. Mazor and coinvestigators, 93 believed something had happened in their care that was preventable and which could have caused or did cause harm. The perceived harms reported included physical and emotional harm, life disruptions, a negative effect on family members, a damaged physician-patient relationship, and financial expense.

Of the 93 patients, 78 completed interviews. Among those interviewed, 28% described a problem with medical care (eg, a delay in diagnosis or treatment); 47% described a communication problem (eg, with the information exchanged or the manner in which it was conveyed); and 24% described problems with medical care as well as communication.

The investigators reported that "few clinicians initiated discussion of the problematic events" and that "most patients did not formally report their concerns," with just 13% formally reporting a problem. About 90% of the patients indicated that their experiences prompted them to be more proactive in their health care, by asking their healthcare providers more questions or researching symptoms and treatments on their own. About 10% of patients reported that they became more hesitant to seek care because of their experiences.

"We found that patients were sometimes willing to share their concerns or questions with their nurses, when they weren't able to do so with their doctors," said Dr. Mazor. "We suspect that if nurses explicitly let patients know that they wanted to know about patients' questions and concerns, they could play an even more active role in reducing the sorts of breakdowns we identified."

Comments

  • coraleliz
    coraleliz Member Posts: 1,523
    edited July 2012

    Lack of communication & fragmented care has always been a concern of mine regarding my care. My docs don't talk to each other. They tell me they see each other on a regular basis(tumor board) & discuss patients at that time. I guess my cancer is not bad enough to discuss. My MO tells me he speaks to my PCP on a regular basis. My PCP tells me she doesn't get any word on me from his office. My MO leaves my blood work to my PCP but she is not sure what to order. It was even worse when the chemo/radiation/ALND(treatment plan) wasn't decided. There were times when I could have disappeared of their radars & they would not know.

    "Formally report". Not sure what this means. Probably if you are a Kaiser patient, there is a way to do this. When dealing with independent physicians, not so much. What do you do? Wait until harm happens & report it to the state medical board? The reason patients don't speak up is because it can hurt the care they recieve in the future.

  • carol57
    carol57 Member Posts: 3,567
    edited July 2012

    Kira, Thank you!  That is very interesting, and the last paragraph is a compelling argument for why we need to find ways to get the nurses some quality LE education.  We have some bco members who have identified themselves as nurses: I wonder how many of them would say that they learned adequate knowledge of LE in nursing school?  Yet as the study points out, these are the kind hearts who enjoy the patients' trust.

  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2012

    Carol, I hate to say it but I know 3 nurses from church, a Sister in Law and a niece that are nurses - and they knew nothing about LE..Unless you deal with it everyday, I don't think it is on any priority list... I was amazed when the Pain Management doc seemed to know "alot" more AFTER I told him that I had breast LE... If it comes up, then they do a little research to sound like they knew about it.. Then my surgeon, for over a year, kept telling me, "Well, its not in your arm and I only took out 1 sentinal node, you don't have it" .. I wouldn't leave his office, the last time, until he referred me to a LE Therapist.. It seems like we do have to speak up and educate the medical community.. 

  • GottaloveNED
    GottaloveNED Member Posts: 211
    edited July 2012

    What frustrates me is that I can't keep my therapist "on" as a regular medical provider. Everytime I want an actual appt. I have to get a referral for an evaluation from my MO. Thankfully, she is happy to communicate by email with me, so I can ask questions to her that way. I even emailed her pics of wrapping results once. My insurance ( which does cover a lot of my LE expenses) requires my therapy to have a beginning, a middle and an end plan, and since I'm basically on self-care/maintenance there is no medical reason for her to keep my treatment plan active. My MO and his staff are good about checking on my LE issues at my visits there. This is the one time living in a small town works to my advantage. They all know each other and work together often on patients so they not only know WHO is my therapist, they know WHAT she thinks is important in terms of LE care. But it would be nice to have face to face appts. with her to discuss garment selection and results. And again, I have good coverage for LE so I can't imagine how hard it is for others.

  • carol57
    carol57 Member Posts: 3,567
    edited July 2012

    GmaFoley, regrettably, we ALL know too many healthcare providers who know little about LE. It's not a conspiracy to stay in the dark, it's just not on their radar screen or easily accessible as an education topic.  My own primary care doc very candidly admits she knows very little, but she'll help me in any way I ask.  And gottaloveNED, I get frustrated too, because I don't need to see my therapist very often, and every time I do, it takes several phone calls to get the darn referral reissued.  Hoop jumping is apparently an event we need to include in the Olymphics we sometimes talk about in the LE exercise thread.

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