Tag Archive for: patient communication

Curious Dr. George | Plumbing the Core and Nibbling at the Margins of Cancer

How to Learn About Cancer in a Classroom: Shaping Compassionate Doctors

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Marin Langlieb
Clinical Research Coordinator at Massachusetts General Hospital

The patients and caregivers we serve here at Cancer Commons rely on their doctors to provide expert, compassionate care. Building the skills to give such care can begin early in a doctor’s education. Here, for a change of pace, our Curious Dr. George asks a future doctor about a unique experience that helped her learn how to connect with cancer patients. Marin Langlieb is a Clinical Research Coordinator at Massachusetts General Hospital in Boston, Massachusetts.

Curious Dr. George: As a recent college graduate in pre-med now working in Boston in research, and as a student interacting with cancer patients, how would you rate your educational experience in preparation for medical school and for a lifetime of work as a physician?

Marin Langlieb: The answer to this question lies in a seminar I took as an undergrad that exemplifies why teaching both the sciences and the humanities to pre-meds is so critical.

After losing my pediatrician to cancer during college, I knew that I wanted to understand more about the disease. From a scientific perspective, my pre-med classes prepared me very well. In biology, it seemed like every semester I had a lecture about p53, a protein that regulates the cell cycle to prevent unregulated cell division. Yet, although I knew all this information about cancer at the micro-scale, I still wanted to understand cancer in the context of real human experiences. In other words, what was it like to actually live with cancer?

At most universities this is a topic that is probably not taught in a classroom. But my junior year, I enrolled in a seminar course called “Community Based Cancer Research Presentations and Discussions” that was part of a broader partnership between cancer researchers at my university and the local cancer resource center. Each class we would have lectures from people with a wide variety of science and humanities backgrounds—such as communication professors, physicians, ethicists, and community participants who were cancer patients themselves—all on cancer-related topics.

The lectures were extremely interesting (for example, one was on the importance of patient advocacy from “Congress to the Bedside”), but the primary goal of this unique program was the connections it fostered. For the scientists, who were researching cancer with cells or mice, it helped connect them to those who would be most affected by their work. For the community participants, they told me they joined the class because they wanted to better understand and communicate the science behind their disease. For example, many of the people I talked to wanted to be able to read complex scientific literature and understand some of the treatments they were receiving. Even more so, they stated that understanding the mechanisms and pathways behind their disease helped give them a sense of reassurance—people actually understood some of what was happening inside their body.

I think my pre-med classes did prepare me for a future career in medicine, although opportunities that connect students and members of the community are critical. For example, this class taught me how to actually apply what I was learning in my science classes to scenarios I might experience as a physician. That is, speaking with the community members taught me that being a good physician goes beyond using science solely to treat patients, but also to help patients clearly understand their diagnosis, their treatment, and their disease. In addition, learning how to communicate science effectively has been crucial to my current work in clinical research, from conducting informed consents to helping write grants.

However, the most important thing the class did was introduce me to some of the kindest people I have ever met. Even now, they push me to study harder, think bigger, and realize just how much of an incredible privilege a career in medicine is.

Marin Langlieb can be reached at mlanglieb@mgh.harvard.edu.

Curious Dr. George | Plumbing the Core and Nibbling at the Margins of Cancer

At Diagnosis, What Do Cancer Patients Want?

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A Q&A with Laura Benson, RN, MS, ANP, president of Conversations in Care, LLC; LauraBensonRN@Gmail.com

Q: In our digital communication world of 2019, some patients may receive the initial message that YOU HAVE CANCER by cell phone, text, email, or even voice mail. When this happens, what do patients most want, and how can that best be accomplished?

A: When I first read your question, I was immediately brought back to a National Cancer Survivors Day around 1988. During the open microphone portion of the program, a patient bravely rose to address the audience. She proceeded to tell us she didn’t know she had cancer until she received the Survivors Day invitation, whereupon she turned to her attending physician and asked, “Well doctor, do I have cancer?” Since then, communication in today’s digital age has not seen a vast improvement. Indeed, a recent report out of California tells the tale of a patient and family learning he was dying via a video robot interaction.

What has not changed over the decades is the need for information that is easily understood, easily accessible, scientifically accurate, and delivered with compassion and connection. The dawn of the “Dr.Google” age has brought new and unique challenges.

There is no lack of information available. Patients and families still want to know cure rates, prognosis, treatment options, whether they will experience pain, where to find specialists, the costs involved, and what clinical trials are available.

Today’s challenge is guiding patients and families to use reliable information sources, and to avoid recommendations made for “cures” based on questionable science. The need for information remains present from the first day of diagnosis until the last day of the patient’s cancer journey. The focus of the information might change over time, but the need is there. For example, if an initial treatment fails to bring about a successful outcome, information needs shift to second opinions and clinical trials.

When searching for information, patients should first look to the source. Where is the information coming from? I recommend looking at websites that not only have vetting and validation behind them, but also are written at a level that is understandable, complete with a glossary and lots of illustrations, such as the National Cancer Institute’s website. Websites of patient advocacy groups are another good source of information. Many of these groups have full-time scientific personnel and top-notch medical boards providing input and comment to the available information. There are many well-known cancer advocacy groups, such as the American Cancer Society, that provide information on a wide variety of cancer types and treatment options. Other organizations focus on the psychosocial needs of patients and families, like CancerCare, which offers counselling, financial assistance, and support groups. Many disease-specific groups exist, as well.

One area of specific need is understanding and navigating the world of clinical trials. ClinicalTrials.gov offers a comprehensive searchable database, but patients need assistance in understanding the medical jargon associated with inclusion and exclusion criteria. Advocacy groups like Cancer Commons bridge the gap for patients, taking into consideration the nuances of an individual patient’s “case” and connecting them with the latest science and experts in relevant fields. This enables patients to learn which science-based treatment options might be best for them. These kinds of groups help assist the patient to their personalized and best next step.

We are moving from the age of personalized medicine to that of precision medicine, and oncology care is leading the way. It is imperative that we guide the patient along with us as the reason for the journey.

As author Chris Pirschel wrote earlier this month for ONS Voice, “Every cancer diagnosis is as individualized and unique as the person receiving it. From family history to societal and economic background to a patient’s genetic make-up and composition, cancer affects each person with cancer differently.”

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Copyright: This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Curious Dr. George | Plumbing the Core and Nibbling at the Margins of Cancer

The Crucial 90% Missed by Doctors on Computers

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A Q&A with Kevin B. Knopf MD, MPH, chairman of hematology and oncology at Highland Hospital in Oakland, California; kevinbknopf@gmail.com
Q: A successful patient-physician relationship depends upon effective bidirectional attention and mutual understanding. Many patients and physicians believe that common current versions of mandated electronic health records (EHRs) severely impede that interaction, especially eye contact. How can a competent and caring clinical oncologist overcome that problem?
A: For all my faults as a doctor, and I’m sure there are many, there is one thing I think I do correctly, and that is I am never on a computer in front of a patient.
I hear from many colleagues that they can be efficient and personable while going back and forth from the patient to their electronic health record (EHR)—and it is true there are various levels of skill here. However, none do as well, in my opinion, as a computer-free patient environment. I say this from my side as a patient having seen dozens of doctors myself—nothing compares to a doctor who spends all of their time looking you in the eye and interacting face to face. This human contact costs nothing, and yet is so vital.
I’m hardly a Luddite; from my side as a doctor the math is infallible here: approximately 90% of all human communication is nonverbal, so if I am typing on a computer I’m only processing 10% of what is going on and my clinical efficiency drops accordingly. I’m convinced that this 90% is important not just for healing the patient; the way questions are answered and interpreted subtly can allow me to order fewer unnecessary tests and be a more cost-effective doctor.
In oncology many of the discussions veer into existential and religious domains, and this can’t be done except on a very intimate level. My greatest enjoyment in clinic are my patient interactions; for my own wellbeing, I hate to poison these with the EHR.
Some days it seems that the patient note in the EHR deteriorates to a “set of lies agreed upon,” particularly the review of symptoms and the physical exam, which is often templated and describes some Faulknerian version of the truth of what is actually happening.
In today’s world of “high throughput healthcare” designed to maximize relative value units (RVUs) and document in the EHR to upcode, it is the patient who suffers. And yet, it is the patient for whom we all go into medicine. I have done my own time and motion studies on this topic, and my current habit of reviewing the EHR in a separate room before I see the patient and then returning to that room to write the encounter after is more efficient than trying to go back and forth between the patient and the computer.
As a third-year medical student, now 30 years ago, the attending asked me to perform a history and physical on an inpatient in front of the entire team (gulp). I’ll never forget that afterwards he said, “you did a good job, but I want you to pull up a chair next time and sit down when you are talking to the patient.” This echoes the saying of the great oncologist Dr. Jamie Von Roenn: “Don’t just do something, sit there.” Indeed, there is a pleasure in the slowness of the patient encounter that most of us went into medicine to experience—and the EHR continually interferes with that process.
I recently spent about 10 days as a patient in the hospital—in three different hospitals—and different health care providers spent more or less time on a computer in front of me. The best came in my room and were computer free. In the end only one pulled up a chair and sat down to ask how I was doing—my friend the breast surgeon, who is a generation younger than me. I notice in her clinic she is an “EHR-free doctor” as well. Consider this a start.
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Copyright: This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Curious Dr. George | Plumbing the Core and Nibbling at the Margins of Cancer

How to Tell a Patient Their Cancer Has Spread

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A Q&A with crisis communication expert Lisa Dinhofer, MA, CT
Q. As a counselor and communicator, you are expert and experienced in managing serious situational difficulties up to and including coping with sudden unexpected death. How would you think it best to approach a person with cancer who is being told, “your cancer has spread”?
A: I’ll answer this question by posing another—how did you discuss the diagnosis initially? Did you jointly establish expectations for addressing this illness going forward?
How a diagnosis is delivered plays a critical role in future conversations around how the illness is responding—or not—to treatment. This initial conversation is the foundation for many more that could go in various directions dependent on disease progression, regression, and patient tolerance.
It’s about process and setting the expectation that you are partnering with the patient in their care, which will include honest and compassionate discussion about options as they become available or diminish. How individuals view a diagnosis changes over time. What can’t be imagined initially may become preferred eventually. Leave room for the unknown.
Initial communication principles that include, “As we address this illness, as we see how your illness is responding, we can continue to make decisions based on what we’re seeing,” set a stage for gentle openers and segues if the need to relay unwanted news becomes necessary. Referencing the illness’s response versus the patient’s, “failure” to respond to treatment rests on the disease not the person.
Strive for balance between optimism, hope, and acknowledgement of the situation’s seriousness. Hope and honesty are not binary. Neither are pragmatism and sensitivity. When allowed, hope’s definition can change in meaning resonant with fluid situations.
A talented artist friend battling lung cancer that had spread to her brain remarked that “hope had become a leash” used by family to drag her from coping and conversing honestly in a way she so desperately needed and wanted in her remaining time. She became more prolific as her illness progressed, enough for a successful gallery show, and used her work to “break through” to her family. Her hope transformed from being cured to preparing her young daughter and husband for what lay ahead. We met in pottery class where she made the urn for her cremains.
The following phrasing suggestions incorporate points above with basics for giving bad news:

  1. “(Patient’s name), we need to discuss your latest test results. Honestly, they are disappointing.” (Pause). This is a “warning shot,” giving the patient an opportunity to psychologically “suit up.”
  2. “The tests reveal the illness has spread to ________. (Pause for a few beats to sink in. Rushing on increases the likelihood they won’t hear anything else.) I’m so sorry, (name.)” (This is an apology for their circumstances, not your failure).
  3. “What this means is _______________.”
  4. “Here are options for us to consider_____________.”

If a terminal condition, that does not mean there are no options; it means there are different options than before. The goals of your care might change from treatment to palliative, dependent on a patient’s perspective.
The most important principles for delivering difficult news are preparation, controlling beforehand any personal discomfort so as to completely focus on them rather than rushing to end the conversation, telling what you know when it is known to be true, and remembering that this is about them, not you.
Copyright: This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.