#LCSM Chat Topic 10/5: Lung Cancer Advocacy: How we can help ourselves


With November Lung Cancer Awareness Month #LCAM17 just around the corner, this is a good time to explore the many ways we can do advocacy work, whether for ourselves or on behalf of a loved one. In fact, this is the topic of this Thursday’s edition of #LCSM Chat at 5 pm Pacific, 8 pm Eastern, moderated by Deana Hendrickson. So, let’s roll up our sleeves and get to it.

Topic Questions

T1: Are there particular advocacy groups with whom you like to work? Which ones? Why?

T2: Have you ever done advocacy on your own, in small or big ways? Why? How?

T3: What do you see as barriers to patients doing advocacy work on their own behalf? Explain.

T4: What do you think about patients doing direct, grassroots advocacy on their own, as a complementary addition to the major orgs?

Please join us on Thursday for what will be a friendly, lively discussion. If you’re new to tweetchats, this will be a good one to dip your toe in, but first read this primer. We look forward to seeing everyone on 10/5!


#LCSM Chat Topic 9/21: Patient-Clinician Communication in Cancer Care: Conflicting Ideals vs. Reality?


Jack West, MD

For the upcoming #LCSM tweet chat on 9/21 at 8 PM Eastern, 5 PM Pacific, we’re going to focus on newly published guidelines for clinician-patient communication in cancer care, and we’ll have the added bonus of being joined for our chat by the lead author of these guidelines, Dr. Tim Gilligan from the Cleveland Clinic.

By way of background, the American Society for Clinical Oncology (ASCO) just released a collection of guidelines for patient-physician communication, which is far reaching in describing clear goals for physicians and all clinicians working with cancer patients. They range from a recommendation of reviewing key medical information with patients, discussing goals and care, a full range of treatment options that includes clinical trials and supportive care, early introduction of discussion of end of life care for patients with incurable cancer, integration of family involvement, discussion of costs as a barrier, and recommendations for clinician testing in communication skills. The guidelines, a product of the consensus recommendations of a broad range of participants, are noted to be based on available medical literature that is very limited in actual data, and even more limited in clear endpoints. Nevertheless, they provide a comprehensive framework and clear aspirations for what I think we should consider optimal cancer care, and I strongly encourage both patients and physicians to follow the link and review the recommendations.

From my perspective, however, I see several challenging limitations and systematic shortfalls in communication when I witness how cancer care is actually executed in the US. Far too many clinicians feel limited in the time they have available with patients to communicate thoroughly and effectively with patients. Some have pointedly noted that at least US-based healthcare is “reimbursement-based medicine” and that there is far more financial incentive for clinicians to focus on documenting in the electronic medical record as a billing technique and maximizing the throughput of patient care than to truly prioritize patient communication – a laudable but potentially unrealistic goal when oncologists are limited to just a few minutes of uninterrupted time with patients per encounter. Skeptics have also long suggested that effective communication skills are more of an innate talent than learned skill set.

Arguably more concerning is evidence indicating that patient understanding of their prognosis is poorly associated with patient satisfaction. An important trial published several years ago in the New England Journal of Medicine revealed the disappointing finding that more than 2/3 of patients being treated for incurable lung cancer (and 4 out of 5 patients with metastatic colorectal cancer) reported that their understanding was that they had a realistic probability of being cured of their cancer with chemotherapy, indicating that either they were not informed of the goals and proper expectation for treatment of their cancer or that they did not understand a realistic explanation they may have been given. Regardless, this raises the question of whether patients can provide truly informed consent to treatment when they do not understand an accurate estimate of the anticipated benefits and risks of treatment. Perhaps even more troubling, this study noted that the patients with an incorrect understanding of their prognosis and benefit of treatment actually reported higher patient satisfaction about their communication with their physician. To quote the authors, “In an era of greater measurement and accountability in health care, we need to recognize that oncologists who communicate honestly with their patients, a marker of higher quality of care, may be at risk for lower patient ratings.”

Unfortunately, I see this pattern all too often in my clinical experience in a community-based tertiary care referral center. The oncologists who are most accurate and honest with their patients and follow all of the best recommendations while conveying the limitations of what treatment can offer in many situations are prone to be viewed as “Dr. Death”, as many patients and families flock to the physicians who are either misleadingly unrealistic or simply evade these discussions while remaining unfailingly optimistic.

In short, I’m concerned that our best recommendations for excellent communication between patients and clinicians are lofty expectations that conflict with the practical limitations of a health care system focused on efficiency and high throughput that provides little time or training to pursue these best practices. At the same time, and perhaps more concerning, there is reason to believe that spending the time and effort to pursue optimal communication actually competes with what is directly incentivized in many institutions, and it can ironically lead to worse patient satisfaction. And if we actually want what we say we want, how can we actually change the system to make that happen?

With these conflicting ideas in mind, please join us for our chat on Thursday, 9/21, when we’ll cover the following questions together:

1) Do you see your health care system prioritizing patient/clinician communication in cancer care? If not, how does it fall short?

2) Should we make patient communicate skills & ratings enough of a priority to dedicate more time per visit or extra visits for this?

3) How can we motivate clinicians to prioritize communication skills over volume & efficiency-based incentives?

4) How can we reconcile ideal of realistic communication about prognosis w/data showing  patients w/low understanding are most satisfied?

5) What are best measures of best patient communication? Patient patient satisfaction? Extent of knowledge? Clinical outcomes?

Additional resources on clinician-patient communication:

Vital Talk: http://vitaltalk.org/resources/

Ariadne Labs’ “Serious Illness Conversation Guide”: https://www.ariadnelabs.org/areas-of-work/serious-illness-care/

The Conversation Project: http://theconversationproject.org/

AHRQ SHARE Approach: https://www.ahrq.gov/professionals/education/curriculum-tools/shareddecisionmaking/index.html

#LCSM Chat Topic 9/7: Doing Cancer When You Have Kids

Original Photo by Unknown Author and this modified image are licensed under CC BY

Although the average age for a lung cancer diagnosis is around 70 years old, an increasing number of younger patients are being diagnosed.  Many of these younger patients have especially aggressive cancer, and have children at home. The patient or their spouse/partner may be uncertain about when and how to tell their child about cancer, and struggle with finding supports that help the children process the situation.

On September 7 at 8 pm Eastern Daylight Time (5 pm Pacific), #LCSM Chat will discuss the special situations that arise in families when the parent is diagnosed with lung cancer and has younger children.  Moderator Janet Freeman-Daily (@JFreemanDaily) will lead our chat using the following topic questions:

  • T1: At what point in the process of cancer diagnosis and treatment should a child be told about a parent’s cancer?
  • T2: How should the child’s age, temperament, or other characteristics influence what the parent says about cancer?
  • T3: Should children ever talk to their parent’s cancer doc or visit the clinic? How can healthcare providers help children cope?
  • T4: What resources are available for children of cancer patients? What programs exist? What activities help?
  • T5: If you know a child whose parent has cancer, how can you best support the child?

We look forward to seeing you in our September 7 #LCSM Chat.  If you’re new to tweet chats, check out this handy primer.


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