How to Tell a Patient Their Cancer Has Spread

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.


Discuss Prostate Screening With Your Doctor, Experts Now Say

Excerpt:

“Older men should talk to their doctors about the pros and cons of prostate cancer screening and make an individual decision that is right for them, an influential national panel of experts has proposed.

“The new recommendation, based on new data from a European trial as well as changes in the way men with prostate cancer are treated, modifies an earlier panel guideline from 2012 that advised men to skip prostate cancer screenings altogether. Screening is typically done using a blood test that measures levels of a protein released by the prostate gland called prostate-specific antigen, or PSA, which may indicate the presence of prostate cancer when elevated. But increased levels can also be caused by less serious medical conditions, like inflammation.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


After Mastectomies, an Unexpected Blow: Numb New Breasts

Excerpt:

“After learning she had a high genetic risk for breast cancer, Dane’e McCree, like a growing number of women, decided to have her breasts removed. Her doctor assured her that reconstructive surgery would spare her nipples and leave her with natural-looking breasts.

“It did. But while Ms. McCree’s rebuilt chest may resemble natural breasts, it is now completely numb. Her nipples lack any feeling. She cannot sense the slightest touch of her breasts, perceive warmth or cold, feel an itch if she has a rash or pain if she bangs into a door.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


How Do We Solve the Crisis in Cancer Communication?

Excerpt:

“Five rounds of the usual chemotherapy/radiation protocol kept Alan Gross alive through decades of living with lymphoma. The treatments were grueling, but he was living proof that science was giving us ways to live with cancer. Then the disease came roaring back, and doctors told him that their medicine no longer worked. They told him to get his affairs in order.

“Every day, thousands of Americans get the end-of-life warning that Alan and his wife, Jane Townsend, heard two years ago. The words are so powerful that they can have a concussive effect, making it hard to hear, to speak, to process information. ‘Your ability to think clearly and concentrate isn’t there,’ Jane told me.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


Melanoma Risk Genetic Testing May Help With Prevention

The gist: Genetic testing can help predict a person’s risk of getting melanoma. A recent study found that people who receive genetic testing for melanoma risk might be prompted to discuss melanoma risk and prevention with more family members.

“Positive genetic risk information about melanoma may help to prompt people to discuss melanoma risk with a wider variety of family members, according to a study published in JAMA that examined the effects of hypothetical genetic testing. Interestingly, even people who received negative genetic testing results were still affected by the results.

“ ‘This study shows us that individuals are sensitive to receiving genetic risk information, regardless of the results, and will likely increase their willingness to discuss melanoma risk and prevention strategies with their families after receiving this type of feedback,’ said study author Mallorie Gordon, MA, of the department of psychology, New School for Social Research, New York, New York.

“ ‘This study indicates that providing genetic risk information to patients and their families may not only improve their understanding of their particular skin health needs—specifically telling patients whether their melanoma risk is related to heredity or sun exposure, as defined by the feedback type of the genetic test—but also improve the risk communication that exists around melanoma and its prevention overall,’ she told Cancer Network.”


Experts Suggest Ways to Increase Cancer Patient Participation in Clinical Trials

Clinical trials are the cornerstone of developing better cancer care. However, less than 5% of cancer patients participate in clinical trials. A recent meeting of cancer experts developed a list of recommendations for increasing clinical trial enrollment. Strategies at the patient and community level include involving patient advocates and community leaders in clinical trial recruitment, simplifying patient consent forms, and providing interpreters. At the physician level, electronic registries may help keep doctors informed about the availability of clinical trials for their patients. Doctors must also work on speaking to their patients about clinical trials in culturally sensitive ways. Finally, at the level of organizations that initiate clinical trials, institutions need to become more efficient about opening and conducting trials.


Experts Suggest Ways to Increase Cancer Patient Participation in Clinical Trials

Clinical trials are the cornerstone of developing better cancer care. However, less than 5% of cancer patients participate in clinical trials. A recent meeting of cancer experts developed a list of recommendations for increasing clinical trial enrollment. Strategies at the patient and community level include involving patient advocates and community leaders in clinical trial recruitment, simplifying patient consent forms, and providing interpreters. At the physician level, electronic registries may help keep doctors informed about the availability of clinical trials for their patients. Doctors must also work on speaking to their patients about clinical trials in culturally sensitive ways. Finally, at the level of organizations that initiate clinical trials, institutions need to become more efficient about opening and conducting trials.


Experts Suggest Ways to Increase Cancer Patient Participation in Clinical Trials

Clinical trials are the cornerstone of developing better cancer care. However, less than 5% of cancer patients participate in clinical trials. A recent meeting of cancer experts developed a list of recommendations for increasing clinical trial enrollment. Strategies at the patient and community level include involving patient advocates and community leaders in clinical trial recruitment, simplifying patient consent forms, and providing interpreters. At the physician level, electronic registries may help keep doctors informed about the availability of clinical trials for their patients. Doctors must also work on speaking to their patients about clinical trials in culturally sensitive ways. Finally, at the level of organizations that initiate clinical trials, institutions need to become more efficient about opening and conducting trials.


Doctors Should Discuss Treatment Expenses with Patients

A recent editorial argues that doctors should talk about the issue of cost when discussing treatment options with patients. High out-of-pocket treatment expenses can cause severe financial hardship that may affect patients’ well-being. A study showed that over 60% of patients want to discuss treatment cost with their doctors, yet only 15% do so. Even though patients frequently want to choose the best treatment regardless of expense, sometimes there are viable lower-cost alternatives. Moreover, some patients may indeed be willing to trade potential medical benefits for less financial distress. Finally, even if patients do not change their treatment choices, discussing treatment costs can help them prepare financially for expensive procedures and learn about options for dealing with medical debt.