Health AGEnda

I’m Dying To Know

Posted in category Communication, End of Life Care

45 comments

In some ways, I consider myself lucky. I know this is a strange comment from someone diagnosed with Stage IV breast cancer. I say this, though, because the first steps on my journey with end-stage cancer were undertaken with the help of a team of health care professionals who excelled not only in medicine, but also in communication.|

Communication in health care is often overlooked. Data on doctor-patient communication is rarely collected, and there are few measures of success. Yet, I believe good communication—both between members of the health care team and between providers and patients—is essential for good treatment.

With one glaring exception, which I wrote about in January, I was blessed with proactive doctors from the day I walked into my primary care physician’s office, certain of my diagnosis. Dr. Lelchuk immediately knew I needed imaging tests and a biopsy of the suspicious area.  She went above and beyond by personally getting on the phone with a trusted oncology surgeon to set up an immediate appointment.

The waiting room at the cancer center was comfortable. We sat there, perhaps six women, all dressed in white cotton robes as if we were at a spa awaiting our manicures and pedicures. Some women, probably there for an annual mammogram, seemed relaxed and even chatted. One was there for follow-up to make sure that cancer had not recurred. And a few sat quietly, nervous. Like me, they were waiting to find out if they had cancer. Unlike me, they had no idea what to expect.

One by one, they called women in for their mammograms.  Some were called back again for additional imaging. Shortly after my turn the office seemed to jump into hyperdrive. Senior doctors and young fellows converged in a room where they looked at the images.  We women sat just outside that room as they spoke in low and urgent voices, trying to make out their garbled sentences. The waiting room had mostly cleared out at this point. I was sitting next to an elegant-looking African American woman in pearls.  She looked as if she was about to throw up. The obvious urgency in the office terrified her.

Her anxiety made me think about how much we fear the unknown. It’s human nature. Once we understand something—even if we don’t like it—we can begin to accept it. That is why I believe one of the most important duties of health care professionals is to communicate fully with their patients, to explain their condition and treatment options in ways they can understand.

I turned to the woman. “Don’t worry,” I said. “It’s not you.  It’s me.” Her eyes widened as she looked over at me. I wasn’t sure she believed me so I got up and walked into the radiology room, interrupting the conferring doctors.

Behold, the enemy

“Those are my images, aren’t they?” I asked the radiologist in earshot of my spa-mate.  I suspect that most doctors would have politely but firmly asked me to return to the waiting area.

The radiologist‘s response was remarkable.  “Would you like to meet your enemy?” she asked.

Tightening the belt of my robe I said, “Yes!”

Dr. Danon asked everyone else to leave and invited me in.  She began explaining the complicated topography of my images.  I felt empowered and smiled through a stream of tears.  Now I knew my enemy.  I was the last patient to be seen that day.  The kindness of the radiologist stayed with me that night.

The next morning I returned for a biopsy.  The same radiologist explained every step of the process.  She knew I was comforted by knowing.  She even turned the sonogram screen toward me so together we could watch as she removed samples of each suspicious area.  Mesmerized, I didn’t even notice any pain from the procedure.

I watched as the radiologist filled tubes with pieces of my breast. She pointed out that the tissue showed extensive blood vessel formation, a hallmark of cancer.  Dr. Danon generously shared information with me every step of the way but—more than that—she prepared me for the biopsy results.

Next came my first meeting with the oncologist.  The biopsy confirmed what had been suspected.  Knowing what to expect, even though it was devastating, braced me for what felt like my own head-on collision.  Dr. Burdette-Radoux sat down with me and explained the treatment options for inflammatory breast cancer and took communication one step further. Unlike the physician I visited for a second opinion, my oncologist was eager to discuss my goals.

“We’re going to send you for a bone scan to determine if the cancer has spread,” she explained in a soothing voice.  Then she discussed the differences between the treatment options depending on the results.  Her kind and careful explanation armed me for two different battle scenarios.   The scan showed a “hot spot” and days later a small piece of bone was removed from my lower spine for biopsy.  Each step of the way I knew my enemy, and thanks to Dr. Burdette-Radoux, I wasn’t caught off guard later that week when the metastasis was confirmed.

At the Maimonides Cancer Center—where I chose to go for diagnosis and treatment—the quality of the communication was exquisite. I wish all adults diagnosed with a serious illness could have a similar experience. Unfortunately, I think my experience is the exception, rather than the rule.

Older adults, in particular, often struggle to get good information from their doctors. They may find the medical terminology off-putting.  They may suffer from impediments like vision or hearing loss that the clinician fails to factor into his or her approach. And sadly, some providers withhold information from older adults out of some archaic and ageist notion that they can’t handle the truth.

In reality, most people go to the doctor because they already know something is wrong.  Like the woman who sat next to me awaiting her mammogram results, not knowing can be more terrifying than the diagnosis itself.  No matter our age, we have a fundamental right to know the details of our own condition, if we so choose.  I understand that not everyone might want to receive all the information up front, as I did.  But ultimately, people need to be informed in order to take responsibility for their health.  How, then, can we train physicians and other health professionals to become better communicators during serious illness?

Recently, the American Society of Clinical Oncology released recommendations to improve doctor-patient communications about “the full range of palliative care and treatment options for patients diagnosed with advanced cancer (defined as incurable disease).”  Perhaps soon, patients and families experiencing serious illness will be able to meet their enemy just as I met mine.

Second in a series. See also:

“Can Good Care Produce Bad Health?”

“Death Panels and Decision-Making: A Radio Interview”

“Making Hard Decisions Easier”

“Can the Blind Lead the Seeing?”

“Think Silver–Not Pink–for Breast Cancer Awareness Month”

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45 thoughts on “I’m Dying To Know

  1. Hi Amy. Thank you so much for sharing this next part of your journey, you are providing care to all of us, as you always do, by sharing so forthrightly. I had to smile at your answer to the question “Would you like to meet your enemy?” Is there anything but “Yes!” that the Amy Berman I know and love would say? My answer is “No!” “Of Course Not!” See you soon, Jim

  2. Thanks for your ongoing insights Amy. This article about the ASCO recommendations just came out in the Journal of Clinical Oncology. http://jco.ascopubs.org/search?author1=Jamie+H.+Von+Roenn&sortspec=date&submit=Submit
    It is encouraging to see this leadership role by ASCO. But how will we change practice? I know your story will be one impetus for change. Susan Beck, University of Utah

  3. Oh Amy. Once again, so insightful. As I struggle to support my 85 year old mother in facing and addressing her accumulating health problems a couple things come to mind with your post. Its clear to me that older adults –and anyone less “empowered” for a host of other reasons, need close friends or family members to be at their side when they “meet the enemy”. And all of us need to urge and demand more from our doctors. We shouldn’t accept that while good communication skills is “a given” for a pediatrician , we tend to give the surgeons or oncologists “a pass”.
    Keep on blogging!

  4. Thank you Amy for continuing to share your experiences with us. While heart-wrenching, the lessons you are sharing – today about communications between health care professionals and patients – are so important. Communicating with older adults and patients with serious illnesses requires skills that have to be taught and reinforced, starting early in the education of health professionals. Many of our grantees are working on this but of course more needs to be done. Thank you for making the importance of this work so real.

  5. Amy, Jim O’Sullivan’s comment was perfect! Thank you for continuing to share your life story. As hard as it is to read on an emotional level, your ability to communicate your experiences is incredible. When I am reading your blog, I feel as though you are in the same room with me telling the story. John and I send our best wishes to you!

  6. Amy, You had me in tears, too, as I imagined you confronting the enemy for the first time. Bravo to the team for handling that first encounter so well; yes, “lucky” you. Your waiting room partner’s story was unfinished, but I’ll bet she was grateful for your kindness and perhaps silently shocked to see you disappear behind closed doors. Thank you for opening these doors into your experiences, Amy. – Gavin

  7. Dear Amy,
    You have done it again! Your second blog, which I have just read, is another wonderful example of your willingness to share your experiences so others may benefit. It is exquisitely written and heartbreakingly honest. Again, my hat is off to you! These are memorable postings.
    One of your ardent fans,
    Marcia

  8. Equally important is your communication with us, Amy. Sharing your story is informative, normalizing, validating, empowering. We are grateful for your candid account of your health care experience. Thank you.

  9. Dear Ms. Berman,
    I have not met a lot of patients like you, perhaps a handful. But then again I meet then at a different moment in their lives; perhaps some had your courage and clarity, your eloquence and kindness, your education, experience and patience at another time. In any event I hope that I have met all of my patients with the honesty, kindness and understanding which you remind us that they deserve. But the truth is that each patient is by definition unique and how they meet their ever-changing condition is also constantly changing. And this says nothing of their friends and family; sometimes I think we spend as much or more time caring for them. I begin my next 16-hour, over-night shift in a little more than an hour. Thanks for reminding me of what I need to bring to my work tonight. And good luck, I’ll be thinking of you, all night.

  10. This post was featured in Grand Rounds at the Covert Rationing Blog on February 22, 2011: http://covertrationingblog.com/uncategorized/grand-rounds-722-read-this-quickly.

  11. Thank you, Amy, for the second, very personal experience in confronting your enemy. We are sharing your blog with the clinicians and medical directors working in Florida’s nursing homes, the place of care for over 82,000 people. It will influence more personal communications and person-centered care. You continue to make a huge difference with your approach to living and health care. Love, LuMarie

  12. I echo Marcus’ sentiment in that it’s heart-wrenching. Gary Romero & Gavin Hougham sums it up in a nutshell that it’s hard to read on a emotional level and that it brings us to tears. However, I give you kudos for communicating your story to us so effectively down to the smallest details. I felt your pain, your anxiety and the comfort you felt in the knowing about your condition and what’s next. Saying thank you seems silly (b/c of what you’re going through) but if we’re not taught by someone that’s experienced your situation, how are we to know?

  13. Amy, thanks for sharing your story as you are truly a role model for other woman (and men) who want to be given the information about diagnosis and meet their enemy and decide how to move forward. I so support your decision to simply go on living and hope all providers will continue to support you in that. I too had a wonderful work up experience. Promoting health in others I do better than self-care and refused mammography for a long time assuming cystic disease. At any rate my one mammogram had the radiologist literally on bended knee (I guess to get down to my level he was rather tall) and in tears. I told him not to worry one bit I was fine with it…and boom off to the surgeon and oncologist and the story is a similar one. All good and wonderful learning experience of what it is like to be on the other side. I would not trade it for anything. We are lucky to know the enemy so to speak and come to love that enemy as a friend in some ways that teaches us well. Please keep sharing your story and journey with us. Barb

  14. Thank you Amy for your post. It is valuable and touching. Thank you for sharing your experience, I am sure it will make a difference.
    We look forward to your next post.

  15. Dear Amy, Thank you for genorously sharing your journey. I am so pleased that you have had such an improved experience with your choosen health care professionals and their ability to treat you as an individual identifying and then providing you with the type and style of communication that supports you maintaining your role as person first and patient second. It is interesting as since time of your first posting, I have found myself increasing my focus on communications with physicians and other health care professionals, esp. related to terminally ill individuals. It has been a valuable experience, one I would not have had, if you had not shared this important journey. Thank you Amy for sharing, I am very thankful for the opportunity and look forward to your next writing. I wish you & your family peace. Fondly,

  16. Dear Amy, Once again, your post is a gift to us all. With your considerable professional expertise, outstanding writing skills, and most important, your willingness to give a transparent first-person perspective, your message is both powerful and applicable. With heartfelt thanks and best wishes,

  17. Dear Amy, Thank you for sharing your experiences with all of us, as difficult as it may be. As a friend, your words are very difficult to read without some emotion. But, as always they are very inspiring and empowering. Your generosity knows no bounds as you continue to be forthright and share your journey with us and teach us about being strong and brave. Knowledge is power and, the more one knows about their health status, the clearer they will be when it comes to choosing which option is best for their treatment plan. I look forward to reading more about your journey and what you can teach us.

  18. Thank you Amy for sharing this story.  Once again you have woven your personal journey and your professional passion — improved healthcare for older adults into your blog post.   I often wonder if there is something that we could do to “bottle up” the empowerment that you embody to help others who may be less confident, more afraid that knowing is worse than the uncertainty of not knowing.  People like the woman in pearls who was sharing the waiting room with you (and what a vivid image you provided of that waiting room and what it feels like).  We all need to remember that it is our health, our care, our life.   

  19. Dear Amy, thank you so much for the powerful description of your experience of having a mammogram and waiting to hear the results. Thousands of women have sat in such a waiting room anxiously waiting to hear their results, and I hope there is some way of sharing your experience, widely with other women. Amy, what is remarkable is that even as you are dealing with a devastating condition, you are thinking of others – older adults – and how they struggle to get information from their doctors. Nowhere is this more apparent than in nursing homes where often residents seldom see their doctors and when the doctor does visit, often they receive little information. Your experience is heartbreaking, Amy; it brought tears to my eyes, but it also made me feel close to you. You are an amazing, wonderful person and through your experience you are helping so many others. I think of you often, Amy. Love, Jeanie

  20. Thank you so much for sharing your story – your strength, elegance, and composure are truly remarkable. I send you all the best as you continue your journey.

  21. Dear Amy,
     Think of you often and how wonderful you are to share your insights and journey. You are truly a woman of dignity, grace and courage.
     Your experiences are lessons to all of us in health care and I am so grateful that in general you have experienced compassionate, caring and knowledgeable providers. Please keep sharing your journey and we will continue to send positive thoughts your way.
    Hugs,
    Nancy D-H
     

  22. Dear Amy, thank you for sharing, so eloquently, your thoughts and experiences. You deserve the highest levels of quality, communication and care and I believe you innately bring the best of those attributes out in others.

    Sending you much positive karma!

    Fondly, Eileen

  23. Bravo, Amy. Ditto all of the heartfelt things others have already responded to you. You are my hero.

    Rani

  24. Dear Amy-
    Your well-written, courageous and incredibly insightful blog is so inspiring and really resonated with a current situation for my 85 year old mother(and my family) as she weighs surgery or not for an aortic aneurysm. Quality of life is her main concern-she doesn’t want a surgery successful but didn’t survive the recovery situation. Luckily her vascular surgeon is respectful and an excellent communicator.
    It’s wonderful how you are using your story and journey to improve geriatric healthcare. Sending you best wishes, Dennee

  25. Dear Amy, your commitment to helping others is inspirational! You just keep on giving! Like so many others, I love and admire you for this. You’ve made us all better people.
    Chad

  26. Dear Amy,
    Your bravery and eloquence leaves me speechless. You are illuminating our world with your very personal insightful accounts of your medical journey. Your essays brought up so many layers of feelings for me as the caregiver, spouse and advocate for my husband when he was diagnosed with pancreatic cancer 18 months ago and went through a grueling series of treatments that were not event free. Your extremely lucid writing about “meeting the enemy” struck home for me. We too wanted to know all, obsessively. Like you, we were lucky in that our care team was clear and compassionate. Amazingly, thanks to science, kind thoughts, and prayers from all parts of the world, we are enjoying each day of borrowed time. You are absolutely right about quality of life priorities. I am priveleged to have met you Amy. You are one of the world’s luminous presences. Sending my most positive energies your way,
    Ronie

  27. Dear Amy, Thank you for highlighting the key communication issue for all patients, especially those facing life-limiting conditions. We need our health care providers to ASK us about what we are experiencing, what we want to know and what our goals are. Most patients won’t volunteer that information and it is squarely on the shoulders of providers to open the door. How many days of enjoying family, friends, nature and favorite activities have been lost to aggressive but futile treatments – and to the fact that distant family members never knew their loved one was so seriously ill.
    Your steadfast and proactive support for our work gives me renewed dedication to making that seed grow into a strong tree that will protect many people from needless suffering. The lemonade you are making from the lemons you’ve been given is refreshing, invigorating, and renewing for all of us who are working to make QUALITY of life the premier value in care. Fight on!

  28. Hello dear Amy. I miss your March blog. I went back to your January and February writings and again was so moved by your courage and ability to use the personal to see others’ human experiences of life and death. Your lightness of being was always trumped by the seriousness of your work but with an edge of intelligent humor. Your Florida friends are beginning our preparations for the 2011 hurricane season and we are forever grateful for your support as the nursing home plans are being updated. Love and friendship, LuMarie, April, Lee Ann and members of FHCA

  29. Amy – Thank you for having the courage and commitment to tell your story with such honesty and clarity. As I said to you when you shared your diagnosis and decisions, I hope that if I am ever in your postion, I would have the courage to evaluate my situation and act on it as you have, considering all the options and choosing the ones that seems most in line with my own goals and wishes.
    I appreciate all the support and knowledge you share with me and others in so many ways. You continue to make a difference in so many ways. Your story helps to bring to the fore the need to clearly present options to people so they can make choices based on their own values and wishes. As care providers we need to follow your lead and promote educated choices. Know that I hold you in my thoughts and prayers and believe in the possibility of healing against the odds. Thank you.

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  31. What a difficult journey you are on. Have you ever heard of the Block Center – it is an integrative cancer center in Skokie, IL? Dr Block has been treating cancer patients very successfully for over 30 years with both conventional and integrative treatments. They are very sensitive to treating the whole patient and are not concerned with just the outcome. If you aren’t familiar with him, I would encourge you to contact him. Their website is blockmd.com. God’s blessings be with you.

  32. Amy,
    From another “spa” member in Ohio–keep up the blogging, it is more helpful than you will ever know! I have experienced very good care and professionals who were willing to turn screens so that I could see, too. For me, not knowing my enemy was far more stressful than knowing it. You do have to advocate for yourself and ask to see images, procedures, test results and then have them explained until clear ( and then maybe one more time). Maybe we are not the typical patient because we both are not so frozen by fear and bamboozled by medical/technical vocabulary.

  33. Amy,
    I am just now reading your incredible blog and sit here so touched and amazed and, of course, with tears running down my cheeks.  All the notes above capture my thoughts and emotions so well. You have a gift of telling your story in such a powerful way that we feel right there with you.  You are amazing and by making your journey so public you have touched the lives of many people. This also gives us an opportunity, in a very small way, to express our love and support for you.  Thank you for all you are and do.

      

  34. http://ihatebreastcancer.wordpress.com/2011/04/23/why-are-you-doing-this/

    My mom died of IBC in 1983; I have Stage IV MBC (bone-only). I feel fortunate to have so much information at my fingertips—that was not the case for my mom.

  35. Wendy, Susie, and Katherine, I stand with you and hope you are doing well. You are in my thoughts and prayers. Katherine, you point out that those struggling with serious illness have more information available today than ever before. I admit that I read personal accounts of side effects related to my treatment choices on the internet. The level of detail far exceeded the medication package insert or pharmacopedia. Katherine, thank you for your advocacy on behalf of those with metastatic breast cancer. And last, special thanks to Linda Harootyan who has dedicated her professional life to improving the care of older adults through her leadership at the Gerontological Society of America.

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  37. How do most people not get this great information?

  38. Are those stock images or did you take them yourself?

    • Dear Jon,
      That image is my right breast. It is not a stock photo. I took it during an office visit with my oncologist. They use an EMR that integrates radiology imaging. And yes, it’s a HIPAA compliant photo because I’m the one sharing it.
      Warmest regards, Amy

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