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NCCS Comments on CMS’s Proposed Revisions to the 2017 Physician Fee Schedule

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NCCS submitted comments to the Centers for Medicare and Medicaid Services (CMS) on the proposed revisions to the 2017 Physician Fee Schedule. Our comments noted our support for the Oncology Care Model, but acknowledged that only a minority of cancer care providers and cancer patients will be part of this model. Therefore, changes to the fee-for-service system to foster patient-centeredness are needed to improve quality of cancer care for Medicare beneficiaries.

We supported some specific changes that CMS proposed to recognize the time spent outside the in-person office visit and to reduce the administrative burden associated with using chronic care management codes. We believe that in these proposals, CMS has balanced the needs of patients with the burden on providers, and that increased utilization of the chronic care management codes will enhance care planning and care management for Medicare beneficiaries with multiple chronic conditions, including many cancer survivors.

Additionally, NCCS supported the comments submitted by the Cancer Leadership Council, which made similar points about the need to reduce barriers to providing care management services and using the codes that would reimburse for these services.

Our full comment letter is reprinted below.

PDF Download: NCCS Comments to CMS on the proposed 2017 Physician Fee Schedule »

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September 6, 2016

Andy Slavitt
Acting Administrator
Centers for Medicare & Medicaid Services
Department of Health and Human Services
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, DC 20201

Re: CMS-1654-P, Revisions to Payment Policies Under the Physician Fee Schedule and Other Revisions to Part B for CY 2017

Dear Mr. Slavitt:

The National Coalition for Cancer Survivorship (NCCS) is a national organization representing survivors of all types of cancer in efforts to foster patient-centered cancer care, including in the medical home setting. We have focused on several critical elements of the cancer care system in our efforts to improve the overall quality of care. We believe that patients should begin their cancer care experience with a shared decision-making process. We also consider patient-centeredness a core element of quality care.

We have lent our strong support to the Oncology Care Model demonstration project, which holds promise for the coordination of care across episodes of care as well as coordination among all cancer care providers. We are especially pleased that the Oncology Care Model includes cancer care planning as one of the elements of care that Oncology Care Model practices must include in their medical home model. Care planning as defined in the Oncology Care Model will encourage patients to consider the goals of their treatment and will foster shared decision-making. These elements of the care process hold promise of improving the “patient-centeredness” of cancer care. For all of these reasons, we believe Oncology Care Model is an important test of the medical home in cancer care. We look forward to its implementation and to evaluation of care that is provided in the model.

Despite our enthusiasm about the Oncology Care Model and the lessons that may be derived from this demonstration project and then replicated, we realize that only a minority of cancer care providers and a minority of cancer patients will be part of this model. We would like to see access to cancer care planning and coordination for patients whose care is reimbursed through the fee-for-service system. These services, as we have stressed above, are critical to fostering patient-centeredness. As a result, we have for years recommended that a new Medicare service for cancer care planning be established. We have offered that recommendation through comments on Physician Fee Schedule updates for previous calendar years and have pursued other actions to establish such a service for cancer patients.

We have in past years expressed our support for establishment of the Transitional Care Management Code, the Chronic Care Management Code, and the Advance Care Planning Code, because these new codes represent important steps toward more effective care management and the delivery of patient-centered care. At the same time, we have urged the establishment of a code that would be specifically targeted to cancer patients and would ensure cancer care planning and management.

Cancer patients would benefit from care planning and management across the continuum of care. However, we note two occasions when these services might be provided with the potential for substantially enhancing the quality of care. After diagnosis and at the time of treatment decision-making, care planning and management services can help to ensure that cancer patients with additional chronic conditions have access to well-planned and coordinated care – care that is coordinated through the episode of cancer care and care that is managed across all medical subspecialists providing care. At the completion of active treatment, cancer patients with additional chronic conditions face substantial challenges in the monitoring of their health status and the coordination of multi-disciplinary care. Cancer survivors may face risks of a wide range of possible late and long-term effects related to their cancer and care treatment, in addition to the challenges of other chronic conditions. Timely follow-up care may be necessary to address these late and long-term effects and ensure high quality of life for cancer survivors after their cancer treatment.

Ensuring the appropriate utilization of the chronic care management codes holds promise of boosting the overall quality of cancer care for Medicare beneficiaries.

Improving Payment Accuracy for Care Management and Patient-Centered Services

In the proposed rule, the Centers for Medicare & Medicaid Services (CMS) stated:

“In recent years, we have undertaken ongoing efforts to support primary care and patient-centered care management within the PFS as part of HHS’ broader efforts to achieve better care, smarter spending and healthier people through delivery system reform.”
We support, with some reservations, the following provisions of the proposed rule that seek to improve delivery of patient-centered care.

  • Recognizing CPT code 99358, for prolonged evaluation and management service before and/or after direct patient care, first hour, and CPT code 99359, prolonged evaluation and management service before and/or after direct patient care, each additional 30 minutes. We believe that these codes, which seek to recognize the resource costs related to time spent outside the in-person office visit to care for Medicare patients, may improve cancer treatment and cancer survivorship planning and management. We hope that these codes will be utilized by providers who are spending substantial time outside the in-person office visit related to the planning and management of cancer care. We have received feedback from cancer care providers that the resources necessary to plan active treatment and to map out survivorship care options are not adequately recognized in existing codes.

  • Reducing the administrative burden associating with the chronic care management codes to remove barriers to billing for these services. Although, as noted above, we saw promise in the chronic care codes in connection with cancer treatment planning and survivorship care, we understand that they have not been widely utilized by providers of cancer care. The feedback that we have received is consistent with the conclusions of CMS regarding possible underutilization of chronic care management services, based on the number of eligible Medicare beneficiaries.

    We understand that the original standards for utilization of the chronic care codes were intended to ensure the proper utilization of the codes and were also intended to offer certain protections to beneficiaries receiving chronic care management services. However, if the standards for the codes are resulting in underutilization, cancer patients are not seeing any benefits from the codes.

    We would not typically support the changes in the consent requirements, the 24/7 electronic access to care plans, or the reliance on fax transmission of care plans to patients. However, in this situation, we think that CMS has balanced the needs of patients against the burden on providers seeking to use the chronic care codes. If this balancing of interests achieves greater utilization of the chronic care codes – including for cancer patients and survivors – it will have been a patient-centered revision of the standards for the codes. We encourage CMS to carefully monitor the utilization of the codes and especially to ensure that that there are conversations between provider and patient supporting patient consent for chronic care services. Patient consent is important because of the cost-sharing requirements associated with chronic care services.

  • Establishing a new G-Code to improve payment for visits that are considered initiating visits for chronic care management services. We believe there is some promise that the G-Code for initiating services will eliminate the potential for the initiating visit requirement to impede access to chronic care management.

We appreciate the opportunity to comment on the calendar year 2017 Physician Fee Schedule update proposal. We commend the efforts of CMS to enhance care planning and management for Medicare beneficiaries, including those with multiple chronic conditions.

Sincerely,
Shelley Signature
Shelley Fuld Nasso, MPP
Chief Executive Officer

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Read more NCCS Policy Comments »

CPAT Members Capitol PACT Act

Highlights from the 2016 CPAT Symposium and Hill Day

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In June, over 50 patient advocates gathered in Washington, D.C. to take part in the NCCS 2016 Cancer Policy & Advocacy Team (CPAT) Symposium and Hill Day.

Days One and Two

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Attendees heard and participated in a number of informational presentations, including “Current Issues in Cancer Care: The Economics of the Cancer Care System,” “Communications Training: Your Story in a Nutshell,” and “Shared Decision Making and Cancer Care Planning.”

For the final activity on the second day, advocates were joined by medical students taking part in the Cancer in the Under-Privileged Indigent or Disadvantaged (CUPID) program at Johns Hopkins and Indiana Universities. The workshop, “How Survivors Can Improve Patient-Doctor Communications,” was incredibly well received by everyone involved, as survivors and medical students shared their stories and experiences to better understand effective ways to communicate about difficult issues.

Hill Day

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CPAT members and CUPID students used what they learned at the symposium to participate in NCCS Hill Day, visiting approximately 75 Congressional offices and speaking with their elected officials about the importance of the Planning Actively for Cancer Treatment (PACT) Act, H.R. 2846. Several Members signed on as cosponsors because they too see the importance of providing Medicare beneficiaries with comprehensive care plans.

You too can get involved. Voice your support for the PACT Act by writing your Member of Congress here.

CPAT Members Share Their Symposium Experiences

Several CPAT members wrote posts about their experience at the symposium and Hill Day.

Sandra Finestone Headshot“The cancer survivors I met at the symposium were empowered. They were empowered to not only improve their lives, but to also make sure that the lives of those they love and the lives of those they have never met could be better.”
– Sandra Finestone

Sarah Noonan Headshot“You don’t have to be a policy wonk to make a difference with your legislators! Really, all you need is passion, a little guidance and a willingness to share your experience in order to help others.”
– Sarah Noonan

Gabriela Perez-Espinosa Headshot“I enjoyed the exercise where we learned to write our story with a purpose. I have shared my story verbally many, many times, but to learn to write it down with a flow and purpose was pretty neat. ”
– Gabriela Perez-Espinosa

Elisse Barnes Headshot“I learned that there are many types of cancer advocacy: 1) supporting those living with cancer; 2) raising public awareness; 3) fundraising; 4) supporting cancer research and clinical trials; 5) improving the quality of patient care; and 6) influencing legislative and regulatory policies that affect cancer care and research like H.R. 2846, the Planning Actively for Cancer Treatment (PACT) Act.”
– Elisse Barnes, JD, PhD

Betsy Glosik Headshot“More than 50 patient advocates from all across the country attended and brought their stories of ovarian, lung, liver, breast, brain, melanoma, and childhood cancers (oh, that’s just naming a few) AND their passion for making a difference in how we improve care and the quality of life for cancer survivors.”
– Betsy Glosik

Read about their experiences in full »

CPAT Members’ Local News Coverage

Here are a couple of examples of local media coverage CPAT members received in their communities once they returned home.

Want to get involved with CPAT?

Complete this Brief Form »

« Back to the main CPAT page

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Watch the Complete Video Recording of the Ellen Stovall Tribute Service

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On February 24, 2016, a tribute to celebrate the life and legacy of Ellen Stovall was held at the Carnegie Institution for Science in Washington, D.C. Family, friends, and colleagues shared their touching memories about a woman who was dedicated to her family, a three-time cancer survivor, and a tireless advocate on behalf of all those touched by cancer. A video recording of the entire memorial service is embedded below. Please continue sharing your thoughts and remembrances about Ellen Stovall by signing her guestbook.

[embedyt] https://www.youtube.com/watch?v=agp3CIBbH3A&width=1089&height=614&centervid=1&vq=hd720&autohide=1&listType=playlist&list=PLyzl-T9rMBd3AZDdTjMKEbWW-LTQKWQUw&plindex=0&layout=gallery&gallery_style=carousel[/embedyt]

Memorial Program

Part One

Sandy Welton, Board Chair of NCCS, welcomes the crowd and reads a letter from Vice President Joe Biden
Barbara Hoffman, JD and Dr. Fitzhugh Mullan, founding members of NCCS
Dr. Richard Pazdur, FDA

Part Two

Dr. C. Norm Coleman, National Cancer Institute
U.S. Rep. Lois Capps (D-CA), Sponsor of The PACT Act
Elizabeth Goss, JD of Turner & Goss LLP

Part Three

“Ellen Stovall: One Person Can Make a Difference” Video Presentation
Sig Roos, cousin of Ellen
Julia Rowland PhD, Director, Office of Cancer Survivorship, NCI
Shelley Fuld Nasso, CEO of NCCS

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NCCS Offers Comments on Alternative Payment Models for Cancer Care as Part of the Merit-Based Incentive Payment System (MIPS)

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NCCS submitted comments to the Centers for Medicare and Medicaid Services (CMS) in response to its request for feedback on the implementation key provisions of the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA). Specifically, we offered comments on alternative payment models for cancer care as part of the Merit-Based Incentive Payment System (MIPS).

NCCS believes there is great promise in the patient-centered oncology medical home (PCOMH) as an alternative payment model for cancer care, and we recommended that a variation on the PCOMH be designed to provide care to survivors of cancer as they move from active treatment to survivorship. The numbers of cancer survivors among Medicare beneficiaries and their complex chronic care needs argue for efforts to design a cancer survivorship model and to find flexible approaches for such a model in a physician-focused reform system.  We offered additional comments related to cancer treatment planning and coordination and measures of resource use.

Additionally, NCCS signed a letter from the Cancer Leadership Council that proposed an alternative payment system for cancer survivorship care and commented on two of the performance measures under MIPS.

 

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Dr. Julia Rowland Discusses the Importance of Psychosocial Care: Engagement and Dialogue

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This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability(Imperatives). The eleventh principle states that “Psychosocial research is integral to comprehensive cancer care and, as such, psychosocial outcome measures should be included in all future clinical trials. The importance of this research and its application and transfer to oncology care plans should be recognized and encouraged.”

Video Transcript:

So I think it’s well-recognized and certainly from the advocate community we’ve heard time and again that cancer doesn’t affect just a body part, it affects the whole person, and often not just the person but family members and communities. So, attending to that is very important and is an integral part of care. And we’ve seen that come out in multiple different ways, perhaps the most spectacular is the IOM report on “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.”

I have to say I was in the privileged position of being the program officer on that particular contract to the IOM. So we were able to write in the request to the people who were going to come together and put that report together to say don’t tell us just the problems, tell us how we’re gonna answer that. And I think that volume does a great job of saying that it has to be part of comprehensive care, that we have to be evaluating people, so if you look at the framework it says we need to be evaluating people, if there’s a problem we need to be connecting them with referral resources, and to me the most critical part is that we follow back.

So if I see a patient and I say, “this patient is depressed and I’m going to refer the patient to a psychiatrist or for some therapy or I’m gonna make a drug prescription,” it’s not enough that I’ve done that. I need to do that, I need to ask, and I need to make the referral, but if I don’t follow back I haven’t done my job. And that, in some ways, is the little piece that we struggle most with in a clinical setting is the follow back. Did it work? Or did I send you to someone, you didn’t go, or you went and you hated the person, or they gave you a prescription but you didn’t fill it, or you filled it and had side effects and stopped using it or threw the pills out, or felt that you were dismissed in some way. I have to follow back. That’s really critical.

So psychosocial care, I think, we know has to be part of the standard of care. We struggled a little in the clinical setting with that because I think physicians have been overwhelmed with managing treatment. But as we’ve gotten better at managing treatment I think we realize how important the psychosocial and behavioral components are, and we’re seeing that embraced more often in the clinical setting.

To do that, I think, you have to walk on all sides. You have to talk to patients and families about it, you have to talk to clinicians, you have to work with systems so that there’s a way to pull up that information right away, evaluate somebody’s status with it, and communicate among all the players what’s gonna be done about this. So there are lots of places where we need to be building systems and having conversations about how to really deliver on what we know is appropriate care. When I think of the research portfolio, what’s fascinating to me is the field of cancer survivorship was originally built on psychosocial studies, not medical outcomes. So a slight twist in that is our pediatric survivorship studies actually first looked at medical outcomes and they’re now coming back and looking at employment, relationships, social functioning. Whereas in the adult arena, a lot of the work was on coping, and psychological adaptation and not so much on fatigue, or pain, or chemobrain that we’re seeing now. So we’re seeing this sort of complementary shift in peds and adult, in part on the adult side is because people are living longer and we need to be addressing not just the medical sequelae, but the psychosocial hand in hand.

And I think in the adult world, the legacy was actually, we used to think about helping people die with their disease, so the focus on coping and emotional well-being was very big when we thought of survivors because we’re gonna help them die of their disease and not live with it. But once we started saying, “oh wait a minute, they’re gonna live with it,” then we had to shift gears and say, “Okay, so your emotional is gonna be driven by the fact that you have these pain syndromes and that your intimate life is ruined by this and we need to address that if we’re going to help you cope with this illness.” So we’ve seen that now come back and be better integrated in the care of adults because we expect them to be there. And we expect survivors to talk about it and bring it up and that’s not easy.

We have all this technology and it’s wonderful, but if you’re feeling really sick, it’s hard for you to use that and exercise that option. You do need to have advocates advocating for you, loved ones who come to the clinic to say, “Well, you know Jessie’s really been fatigued lately,” or “John has really been yelling at the kids lately,” so that you have resources to help you get the care that you need. So it has to be a dialogue, we have to be engaging all of the parties. And it’s moving. I think we’re seeing that science move forward.

About the guest: Julia Rowland, PhD is the Director of the Office of Cancer Survivorship (OCS), Division of Cancer Control and Population Sciences (DCCPS), at the National Cancer Institute (NCI). Since she assumed the position of full-time Director of the OCS in 1999, Dr. Rowland has sought to champion the visibility of and investment in cancer survivorship research both within the Institute and across other federal and non-governmental agencies, and to raise public awareness about the health and quality-of-life needs of the growing population of cancer survivors and their families.

The views or opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions or views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

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Video Post: Dr. Fred Smith Discusses Payment Systems in Cancer Care

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Earlier this year, Dr. Fred Smith participated in a National Coalition for Cancer Survivorship Cancer Policy Roundtable panel addressing the question of whether new cancer care payment systems foster the delivery of the right treatment at the right time.

VIDEO TRANSCRIPT:

I’m Fred Smith, I’m a practicing medical oncologist in the Washington community area and have been doing so for the past 30 years. Prior to that, I was in academic practice at Georgetown University’s Lombardi Cancer Research Center.

The major challenge that all community oncologists would admit to at the present time is the concern about delivering state of the art, cutting-edge care and being reimbursed for this. Many community oncologists have quit the practice of medical oncology in the community to join health care systems because of the red ink, if you will, of the drug expenses. I think that, in terms of trying to keep to date, we like to offer cutting-edge therapy and sometimes, these are met with delays in reimbursement.

We are appropriately asked to request prior authorization for a plan of treatment. I think that is a very reasonable thing to do. And we all try to conform to the National Comprehensive Cancer Network clinical guidelines, but even doing so, we’re often left with delays in reimbursement that has led to a number of my colleagues closing their practices to join a health care system.

I think in terms of looking forward, the ideas of bundling for payment leaves many of us concerned that we won’t be able to mete out the same care. In terms of what was discussed by some of the other panelists, Dr. Newcomer and Dr. Kline, of paying for episodes was a lot more palatable. And if that can be taken to the community practitioner–the community practitioner could get rid of the vagaries of retailing chemotheraputic agents themselves… I think that would lead to a much more comfortable practice of medical oncology in this day and era.

About the contributor: Dr. Smith is a practicing Medical Oncologist in the DC Metropolitan Area and holds a Clinical appointment as Associate Professor of Medicine at Georgetown University having pursued five years of academic research during that tenure at the Lombardi Cancer Research Center. He has contributed several publications during that time and continues to pursue a keen interest in Clinical research in Breast, Lung, Colorectal, Ovarian and Lymphoma in his community practice.  As a consequence, he remains very much in touch with the realities of patient care while maintaining a cutting-edge cancer care focused on the comfort and satisfaction of each patient and family. He represents an excellent bridge for both the academic and private practice communities.

The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

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WCOE: The Dempsey Challenge, The 100 Day Project, LGBT HealthLink E-Summit, Integrating Palliative Care in Cancer Treatment, and More News

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What Caught Our Eye (WCOE)
Each week, we recap the cancer policy articles, studies, and stories that caught our attention.

https://twitter.com/NikiBarrPhD/status/655062042769006592

 

 

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Video Post: Dr. Bob Carlson and Joan McClure Discuss the National Comprehensive Cancer Network Guidelines

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The National Comprehensive Cancer Network (NCCN) is a non-profit organization, created by an alliance of 26 leading cancer centers in the United States. At the National Coalition for Cancer Survivorship’s 2015 Spring Cancer Policy Roundtable, Dr. Bob Carlson and Joan McClure of NCCN sat down with us to talk about their organization’s Clinical Practice Guidelines. In this clip, Dr. Carlson and Ms. McClure explain the organization’s principles and detail the thorough process of evaluating new cancer treatments and how they make their recommendations for the advancement of quality cancer care.

The NCCN guidelines have been “translated” to easy-to-understand language in order to inform patients and caregivers about all of the available treatment options for their disease. They are available for free on the NCCN Patient website.

VIDEO TRANSCRIPT

Carlson: With the advent of new payment models, the NCCN guidelines will assume even greater importance in maintaining the optimal standard of care for patients with cancer. The NCCN guidelines are developed by expert, multi-disciplinary panels with patient advocacy members.

McClure: We have 49 separate panels and developed 61 difference clinical practice guidelines for treating cancer. All of our panels are multi-disciplinary. We have, as a core, medical oncologists, surgical oncologists, radiation oncologists, and pathologists on our panels but we also have other ancillary specialties as required by a particular disease site.

Carlson: The panels specifically evaluate the evidence in support of various therapies and encode those optimal, evidence-based therapies into the guidelines themselves. Important in the principles of inclusion of therapies or treatment options in the guidelines is first of all the evidence that supports the therapy and our guidelines are always annotated with the level of evidence specifically behind each recommendation.

McClure: One of the things that we are most concerned about is ensuring that the quality of our information is always up to date. So each one of our guidelines is reviewed by the multi-disciplinary teams at our member institutions at least annually and the guideline is completely reviewed by the guidelines panel. We also do interim updates when there’s a change in the data that supports various treatments that could change the standard of care. So if there’s a new agent approved by the FDA, or if a clinical, a large important clinical trial is stopped for either efficacy or toxicity, or an important publication comes out, our panel will meet on an interim basis to update the guideline. We believe in transparency, all of our guidelines and recommendations are available free of charge on our website, www.nccn.org. They’re available to clinicians, to patients, to anyone who has an interest in the guidelines free of charge.

We look at each recommendation in terms of the efficacy, the safety of the intervention, the quality and quantity of data, and the consistency of the data. And this year our panels are going to be starting to look also at the affordability of a regimen. And over the next year or so these data will become available to users of our clinical practice guidelines to allow patients and clinicians to make decisions about what is valuable to them.

Carlson: We want to include all of the options that would be most reasonable for patients and physicians to consider. We think that choice is important because the various therapies that individuals consider, or the various dimensions of therapies that an individual consider might vary from one patient to another. One patient may think that the effectiveness of the therapy is the only consideration that they would have, while another patient may be very concerned about a specific toxicity and yet another patient may be overly concerned, or be appropriately overly concerned, about cost of care. And so the maintenance of choice allows patients to make individualized treatment-based decisions. As we move into new payment models as well, having those options that define what the appropriate standard of care is means that patients and physicians can look at those options and if they select one of those options and move forward with one of those options, they may be confident that the decision is not being made strictly upon cost or some other incentive that may exist to choose one thing over the other. Again, patient choice and physician choice is central to our guidelines’ philosophy.

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About the Contributors: Robert W. Carlson, MD—Dr. Carlson is the Chief Executive Officer (CEO) at the National Comprehensive Cancer Network (NCCN). He joined NCCN as CEO in January 2013 following an esteemed history of leadership positions within the organization including, most notably, Representative to the NCCN Board of Directors, Chair of the Breast Cancer Guidelines Panel, Member and Founding Chair of the Breast Cancer Risk Reduction Guidelines Panel, and Chair of the Survivorship Guidelines Panel. Joan S. McClure, MS—Ms. McClure is Senior Vice President of Clinical Information and Publications for the National Comprehensive Cancer Network (NCCN).  Ms. McClure’s group develops the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), associated NCCN Guidelines for Patients®, the NCCN Drugs & Biologics Compendium(NCCN Compendium®), NCCN Chemotherapy Orders Templates (NCCN Templates®), the NCCN Biomarkers Compendium®, and JNCCN — Journal of the National Comprehensive Cancer Network. Ms. McClure also serves as an Associate Editor for JNCCN. 

The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

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Metastatic Breast Cancer: A Student’s Perspective

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Tyler Trahan

Guest Post by Tyler J. Trahan, M.Sc.

Recently I had the privilege of attending “A Journey of Courage and Hope: The Johns Hopkins Metastatic Breast Cancer Retreat for Couples.” Facilitated by a renowned leader in patient-centered breast cancer care, Lillie Shockney, this unique retreat for patients and their spouses explores the resources to cope physically, financially, and emotionally with the chronic nature of metastatic breast cancer diagnosis and treatment. It engages participants in discussions about end-of-life in a safe and comfortable setting and provides people an opportunity to share their stories and to build relationships with others facing the same challenges.

As a medical student, the perspective gained while observing this retreat is invaluable in providing better patient care in the future. While a majority of patients with metastatic breast cancer report having good communication with their health care team, two out of five still don’t openly discuss deeper concerns about emotional well-being, side effects, symptoms, and quality of life – factors that can alter treatment recommendations.1

During times we shared meals together, I asked patients and their spouses, “After everything you have gone through, what is one thing you wish you could express to oncologists of the future?”  Some patients needed time to think, while others reacted as if they had been waiting for the opportunity to influence care of subsequent patients.

“Information,” one replied. “I wish the doctors were more forthcoming and direct in providing information about all of the possibilities that lie ahead.”

One inherent hardship for cancer patients and their families is the immense amount of uncertainty tied to the diagnosis.  Many feel lost and aren’t even sure what questions to ask. Therefore, the desire for physicians to volunteer more information about all possible treatment options and prognoses remained a common response.

Many wished for oncologists to remain cognizant of the new world their patients are entering, one in which everyone speaks an entirely foreign language.

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“What’s on the mind of metastatic cancer patients” word cloud created from responses to pre-retreat survey.

A patient explained, “When we got the diagnosis, it was like we had to learn calculus again.”

Even after researching their cancer during its initial stage, the lexicon would shift as the disease progressed, and they would again find themselves frustrated with their lack of understanding.

These responses were surely powerful, but even more so was the exposure to the uncensored experiences of metastatic patients during this retreat. When you see the tears of a young mother trying to accept leaving three children behind, you quickly learn that while medication may shrink a tumor, there is yet to be a chemotherapy regimen that targets heartache. You learn that not even years of Tamoxifen can quell the vast amount of uncertainty these patients face. And while our goal as physicians is to heal our patients…does no evidence of disease mean that person is healed?

Most importantly I learned that healing stems from hope. And maybe for some, this is no longer a hope of immortality, but a hope for joy to be found in each day that remains. Patients have a right to this hope, and oncology providers have the responsibility to share in their hopes whenever possible. This is truly a partnership.

A group photo of all the attendees remains on my desk, above textbooks and board review materials, serving as a daily reminder of the humanity to be recognized in every patient I encounter. I would like to provide the promise that lessons learned from this experience will be applied to the betterment of all cancer care in the future.

About the Author: Tyler J. Trahan, MSc is a second-year medical student at Central Michigan University College of Medicine with a strong interest in patient-centered oncology care and research. His goal is to understand the inherent fears and aspirations of future patients in order to take a more active role in providing holistic care for patients and their families.

The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

 

Sources Cited:

Cancer Support Community. (2012) “Open to Options™/Advanced breast cancer online survey results report.” Improving Patient-Provider Communication and Shared Decision Making Tip Sheet

 

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WCOE: Life-saving End-of-life Discussions, New HHS Investment, When Seniors Talk to Med Students, and More

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What Caught Our Eye (WCOE)
Each week, we recap the cancer policy articles, studies, and stories that caught our attention.

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