A Model for Patient Care

Sometimes we just don’t realize how good we have it.

So it was last week at the San Antonio Breast Cancer Symposium. Each day at noon clinicians would snag a boxed lunch and fill Ballroom A. The lines at the microphone were long as these doctors brought their most challenging cases in front of a highly regarded, multidisciplinary panel of experts. Questions ranged from the appropriate use of biomarkers to when to cease treatment. One “case” was a woman who was diagnosed during pregnancy, another about the need for a biopsy for a newly metastatic diagnosis.

Sandwich in my own lap, I sat with my friend AnneMarie. I’ll admit we weren’t just sitting in…our wonderful and very wise friend CJ, President of METAVivor (the only national organization I know of exclusively focused on metastatic breast cancer research) served on the panel. Her focus was the ever-important “quality of life” or QOL issues. We were there to support her, as well as to satisfy our own curiosity.

In the middle of the session I leaned over and mentioned in passing that it reminded me of my own multidisciplinary consult.

“WHAT?” she asked.

I told her about my day at the Revlon/UCLA Breast Center Multidisciplinary Program, and I was handily reprimanded for not having yet blogged about the experience and the center as a model for care. So here we go:

I did quite a bit of work in advance of starting treatment – any number of consults and many questions were answered by the time my anxiety rose to the level of needing to DO SOMETHING. I seemed to have consensus around and confidence in starting a course of neoadjuvant chemo, which is to say starting my chemo before surgery.

There were some remaining questions, however. 87 of them, in fact.

The Revlon/UCLA Breast Cancer is a world-class institution. Founded in the early 90s by Dr. Susan Love (now of the Dr. Susan Love Research Foundation). When you walk in the door you immediately sense the whole-person approach to care that they provide. Warm, inviting and decidedly not “clinical,” the art and architecture convey a sense of calm.

And there I was, the morning Passover began in March 2002. Prior to my arrival I had spent a couple of days running around town collecting, then delivering every relevant anything I could put my hands on: pathology reports, slides, scans, scan reports, bloodwork….

Over the course of the morning I would meet with a medical oncologist, a breast surgeon, a radiation oncologist, a plastic surgeon and someone from psycho-social support. They see 4-5 patients each morning, and the staff rotates through each room. While we go off to lunch, the medical team meets, along with a pathologist, to address each patient’s situation, make recommendations and respond to questions. After lunch one member of the team returns to meet the patient, provides the team’s assessment and wraps up. It’s quite a day!

The staff at the clinic had advised me to bring a guest or two along; there would be a great deal of information and it helps to have someone to ask questions, take notes, and make sure you understand.

Speaking of questions – boy was I ever prepared! In the days before my consult I started writing out the questions I had, from how many cycles of chemo to complete before I scheduled my surgery, to my surgical options, to the post-surgical ramification of radiation on various reconstruction options.

It got a bit unruly, my list of questions. So I divided by specialty ..and in the end, I arrived at the clinic with my husband, my oldest friend ever, Lisa, and six copies of my 5-page, 87-question list. I was leaving nothing to chance.

When we arrived we were warmly greeted. After a brief orientation we were escorted to an “exam” room, which, while I imagine housed all the traditional exam room needs, was warm, comfortable, and even large. Not a hospital gown in sight! But there was a tape recorder (yes, back in the day…) which we were urged to use to record our meetings so that we would have the information any time we needed it. One by one the doctors came in for their consults, and were handed my list of questions for discussion…

I dare say some of the docs were a bit overwhelmed by the whole thing (which is to say they thought I was nuts) and as expected there weren’t answers to some questions (and no, I didn’t ask the obvious and unanswerable…). But I assure you I maximized my use of the day, and it added greatly to the confidence I had moving forward. They team reinforced the decisions I had already made, and gave me direction on the choices to come.

Without exception everyone I encountered was thoughtful, sensitive, supportive and clearly devoted to their work.

So the challenge is this: I have no idea what it costs to bring together a team like this, to run a clinic that can provide a host of answers within a context, with sensitivity to how their recommendations play out across the spectrum of cancer care, and an understanding of how their answers impact other areas of patient care. I do know that it provides enormous patient benefit, in terms of providing knowledge and answers, as well support and confidence. I know everyone should have access to this kind of care!

I live in Los Angeles, in the shadow of at least four world-class cancer centers. I know our resources are vast. I know how lucky I am. But I also wonder, with the advent of “telemedicine,” whether comprehensive, multi-disciplinary team

This is a model that can and should be replicated everywhere! And as always I come back to: what can we, as advocates, do to make it happen? 

Advertisements

9 Comments (+add yours?)

  1. Susan
    Dec 16, 2012 @ 14:26:27

    Lori, I went to this year’s first “ASCO Quality Care Symposium” in San Diego on November 30-December1. ASCO developed a system called “QOPI” (Quality Oncology Practice Initiatives) to help oncology offices have systems with checks to deliver quality of care with keeping their budgets in mind. What was so great about the symposium as that they had speakers using QOPI ranging from the model at MD Anderson Cancer Center to a small practice that is dedicated mostly to women’s breast cancer with some ovarian as well, and it was fascinating to hear how the small practice was trying to keep up the paperwork for QOPI as well as the larger practices. What was most exciting is that they invited patient advocates, had a patient advocate as a speaker and specifically asked patient advocates to ask them questions at the mike. If anyone is interested in more about it I wrote a post about it at: https://a4bc.wordpress.com/2012/12/04/asco-quality-care-symposium/.

    Reply

  2. Vicki Tashman
    Dec 16, 2012 @ 15:05:44

    I too went to the Multidisciplinary consult at UCLA and it was fantastic. I’ve recommended it to other survivors many times over the years. Thanks for your write up!

    Reply

  3. DrAttai
    Dec 16, 2012 @ 19:16:26

    Great post Lori (as always!). Breast cancer is a complex disease and the days of one provider trying to “do it all” for a patient are long gone. In a large academic center, a patient might see all relevant physicians and support personnel within a single day, all under one roof. In community practices such as mine, we’re all in separate offices, but work together to make sure that patients get all opinions and information that they need and deserve. You can find coordinated care in many different practice situations – the important thing as a patient is to know that coordinated care is considered standard of care – make sure all your docs are talking to each other!

    Reply

    • Lori
      Dec 17, 2012 @ 09:55:58

      Excellent point…I agree completely that the focus must be on coordinated care. One of the challenges for the patient is the discovery that, often at the worst possible moment and generally without any knowledge or preparation, that they have to figure out how to be the head of their own medical team.

      Reply

  4. BreastCancerSisterhood.com
    Dec 17, 2012 @ 09:36:39

    To echo Dr Attai, it is a great post, Lori. Yesterday I posted my last blog. I just can’t write about cancer anymore, but will continue to follow you and your insightful words.
    Wishing you all good things,
    Brenda

    Reply

  5. chemobrainfog
    Dec 17, 2012 @ 10:41:27

    Thanks for writing this up….. I am SO damn impressed with this model of care. Even though I was treated at one of the finest cancer centers in the world, during the decision making process, I “happened” upon much of my information. The difference between risk of recurrence v risk of getting a 2nd primary, radiation can create issues with plastic surgery if I opted for lumpectomy….. I was fortunate to have choices but I had no one to help me navigate the implications of each choice. To weigh the risk/benefit of each option…..

    I was always the captain of my medical team but it was more accidental than deliberate. I wonder how we can reach into the communities to make sure everyone faced with options has all of their options explained… and even when the treatment is clear cut, risks outlined in ways non-medical folk can understand.

    I’m so glad you shared your experience. It helps others understand what it means to have everyone weigh in WHILE treatment plan is being decided. Even if we don’t have the luxury of these types of facilities, we can try to find doctors who, like Deanna, are “team players” and are willing to spend time making sure we get it…

    Miss you madly…

    xoxox

    Reply

  6. Facing Cancer (@cancer2gether)
    Dec 19, 2012 @ 11:45:37

    Wow, that sounds like such a positive and supporting patient experience. Much better than waiting for ages in the waiting room for one two minute appointment, no doubt! Having everyone discuss the situation, and receiving feedback on that conversation all on the same day while hanging out at a comfortable clinic. . . it’s certainly a good tone to set at the beginning of what often feels like a too-fast and totally overwhelming experience. It’s a very nice model of care, indeed. ~ Catherine

    Reply

Please join the conversation...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: