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Many of you know that eight months ago I was diagnosed with Stage IV inflammatory breast cancer, which has spread to my spine.  My incurable diagnosis means that I live with a chronic disease, just like millions of older adults. Life continues to be fairly routine with work, play, friends, and family.  One of my routines occurs on the first Monday of each month, when I visit the Maimonides Cancer Center for an infusion of drugs designed to slow the cancer’s impact on my bones.  The center is cheerful.  The staff greets me by name and hands me a buzzer that vibrates when I am next, the same buzzer you get at your local Olive Garden.  Each month I see many of the same people receiving their treatments.  I have already figured out who likes Dr. Phil, the local news channel, or a good book as they dutifully absorb their chemotherapy regimen.

One woman in particular caught my eye, perhaps because she is elderly and frail—just the kind of person that the Hartford Foundation is dedicated to helping. She appears to be in her eighties. Standing less than five feet tall, she walks in slowly and carefully, a pink crocheted cap on her head, accompanied each time by her son. Over the course of her infusion, her color fades. She leaves more frail than she came in. Each visit, she is visibly worse.

Of course I know that chemotherapy almost always causes short-term debilitation. But looking at this older woman, I can’t help but wonder. Did her clinicians talk to her and her son about her prognosis and the relative benefit of the chemotherapy? Did they understand the risks and benefits of aggressive versus palliative treatment? Maybe they do understand, and the chemotherapy will cure the cancer after months of misery, making it all worthwhile. But maybe not.

I speculate about this woman because I know that too many health providers are uncomfortable talking to patients about death and dying. Of course it is human nature for physicians to want to avoid telling patients that the end is near. Unfortunately, they are no longer trained to use the word “terminal.” Instead, they use veiled language like “advanced illness.”  Would you know that meant you had a life limiting, incurable disease?  I am glad my oncologist was willing to be clear and honest with me. But even at Maimonides, I encountered health professionals who were uncomfortable with conversations that acknowledged mortality.

For example, one day I went to see a social worker at Maimonides to ask for help with my will. (Maimonides provides access to volunteer legal advice for its cancer center patients.) I told her I was seeking help in getting my affairs in order for my children, since I had terminal disease. She blanched.

“You shouldn’t speak that way,” she said. “There’s always hope.”

“I have stage 4 metastasized inflammatory breast cancer,” I said, puzzled. “Of course I am ever hopeful there might be a cure. But the reality is, I am terminally ill. I need to get my affairs in order.”

She became visibly upset. She was concerned that I was depressed, misinformed, and focusing on the negative. Later, she even spoke to my oncologist and suggested I needed to join a support group.

Maybe a support group would be helpful, but the social worker was missing the point. I am not misinformed. I am very well informed (which my oncologist told her, thankfully). There is a fine line between acceptance and giving up hope, and I believe I am on the right side of it.  Perhaps the social worker was trained to interpret words like “terminal” and “dying” as red flags ripe for her intervention. Open and honest communication about a prognosis should not be a cause for alarm.

The social worker was trying to be helpful and did give me the information I sought. But I see this kind of response as a barrier. If health care professionals are uncomfortable talking about death and dying, or hearing their patients openly confront their illness, how can patients with serious health issues ever hope to get realistic information about their prognosis?

Many people interested in health care reform advocate for patient-centered care, the concept that patients should make decisions about their own treatment and care. But how can patients and their families make useful decisions without good information? (See this great blog from Jesse Gruman on this conundrum.) How can patients guide a team of health professionals if they aren’t well-informed?

When patients are not well-informed by the health care team about their illness they are unable to fully participate in patient-centered care.  It is akin to asking a blind person to lead a team of seeing people through a minefield. Why do we keep patients blindfolded?  Providers must be willing to address issues of death and dying.  To physicians, nurses, social workers, and other members of the health care team, I call upon you to help your patients face mortality with eyes wide open.  Only then can they can help you understand their goals and the kind of care they want to receive.

Amy Berman, BS, RN, is Program Officer of the John A. Hartford Foundation. She writes at healthAGEnda, where this post first appeared.

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13 Responses for “Can the Blind Lead the Seeing?”

  1. All of them just wait and see others doing the lead in these kind of things.. They don’t know that sooner or later this will affect them in a bad way when nature will get angry with them. I am bringing a plant in my garden and saying others too. that’s the way to lead in the greenery .

  2. Sue says:

    Thank you for your continued education. Your candid and direct dialog are an inspiration. You are magnificent!

  3. Amy Berman says:

    Sue, thank you sincerely for the kind and encouraging words. Lead answer, you are right that many expect healthcare providers to lead them. Serious illness touches everyone; our parents, spouses, friends and ourselves. By sharing this experience I hope to make healthcare providers more sensitive to the needs of their patients experiencing serious illness and help patients advocate for care that meets their goals. Thank you both. Amy

  4. Matthew Holt says:

    Amy–great post. And it goes without saying that people are scared to talk about death.But EVERYONE needs a will to put their affairs in order AND a living will to help relatives and clinicians make the decision they ant if they’re unable to do it themselves. That’s part of what Engagewithgrace.org is trying to do

  5. Amy Berman says:

    Matt, am ever your fan for sharing such a broad range of opinions here on thehealthcareblog.com. And your moral compass always points to true north. These are universal issues that should be better supported by policy. Thank you for sharing the website and for your unwavering support, Matt. All best, Amy

  6. I truly agree with you…my mom died of cancer and my mother in law as well. But it helped a lot, not only for the patient but also for the entire family, that their doctors were straight forward with their prognosis. It gave us a better leverage in handling the situation at hand however hurtful it had been.

  7. Undoubtedly the consumers can lead the charge in educating their provider teams on communication needs, technology they enjoy using to simplify the administrative and technical burden of illness (chronic illness is allot of work).

    I am 32 years into my healthcare career: evenly divided into clinical, administrative and informatics disciplines. Today, I am working with many to drive a consumer empowerment through basic health education and the use of e-health tools to facilitate a true market driven approach to healthcare.

    Why, because I have had diabetes for 45 years and remember how hard I fought to get reimbursement for blood glucose testing and my first insulin pump in 1984. Later in my career I led a interdisciplinary team toward a focused self management model inclusive of twice weekly group visits. The outcome: less hospitalization days, fewer ER visits, higher perceptions of well being and trust between patient peer pairs and our team.

    I appreciate your comments and participation in OUR paradigm shift. The time is now.
    @untangledhealth;@chemspider

  8. Cathy says:

    Amy,

    You raise a consciousness in all of us and I think, What’s Love Got to Do with It?. This song comes to mind when I think of you. When I think of living, loving and laughing, I think of you. When I think of opportunities, hope and dignity, I think of you. The more that I think of you, the more I want to say THANK YOU. For, your presence along my GNLA journey has enriched my life experience and expanded my view. Best, Cathy

  9. Carolyn Simon says:

    Amy,
    I read your article, Without a Cure, A Focus on Quality of Life, in my local paper this morning. I have read a fair share of similar articles, but for some reason yours touched me at a personal level. I felt as if a friend were sharing her thoughts with me. Perhaps at 71 I recognize that life is not something I can always count on, but rather a condition to be known as dear and fleeting. My health is good, at this point, but I know the fragility of that comment.

    I wish you good days and want you to know that I intend to keep this article with my personal papers and in my mind. When the day comes that I may need the strength you exhibit, I want to have it as a reminder to me and my children that I want to keep my status as a person, ill or not. There are many things worse than death (Not as permanent, but certainly worse) and I want to face them with dignity, quality of care, and clarity of choice.

    I hold you in my thoughts. carolyn

  10. Kaja says:

    Hi Amy, I read your piece in the Post and the sought out further writing, which led me to this site. I want to commend you for your insightful, thoughtful and brave writing and thinking on this most difficult of subjects. You are truly an inspiration.

  11. Dear Amy,

    Chemo is the only treatment that is available for those who are tumor negative. We all have radiation and often this is given for to those with bone metastasis. It is not as long a treatment regiment as when one is of the earlier stages.

    I am in my 18th years since diagnose. I am ER positive, PR and HER2 negative. I have used hormonal drugs for 17+ years. My first recurrence was regional and my 2nd was bones and the new aromatase inhibitors that had come out kept me NED for years.

    When my cancer recurred again four years ago, it was with widespread pulmonary and pleural metastasis along with a pleural effusion. I had a VATS for a biopsy and the thoracic surgeon notes stated that both lungs and pleura were studded with tumors. The tumor board suggested chemo. My oncologist was away and had not attended this meeting. My oncologist recommended hormonal drugs. I have been on them for the past 4 years. When one fails, I go to the next. I am redoing them now. You can survive a long time doing hormonal therapies for those who are either ER or PR positive. This is what the cancer response to best.

    I am very surprise when women do start with chemo when their cancer spreads to another organ when they are ER or PR positive or HER2 which has a target therapy. However for those whose tumors are Negative, they have no other option. Not every organ takes radiation. No one ever suggested it for my lungs. Please remember that not everyone is fortunate in having what is known as triple positive (or at least one of the positives, ER/PR or HER2 positives). The triple negatives don’t have a lot of choices.

    Terminal disease we have. However, I prefer the term “living with metastasis”. I will someday be at the place where I will say, yes now I am terminal and there is little else to try. Not yet! You aren’t there either.

    Respectfully,

    Joanne

  12. When I was diagnosed with depression at 19 years old, the words my Mom always kept saying to me in addition to “This too Will Pass” was “To Know Oneself is to Know the World.” She was so right.

    Your experience with the clinical world echoed her (God rest her soul) assertion. Most of us enter the field as wounded hero children in seach of an answer. Clinicians are simply people who are in dire need of consciousness through a transformtive path as much as our patients.

    Just like the mental health challenges within ourselves and our families that may have driven us to the “helping field,” we often have the blind eye you speak of, if we are not in therapy and taking care of our own mind, body and soul, around issues of life and death; our own life and our mortality in particular.

    Your story reminds me how important it is for clinicians to “get right with their own light” before we shine a faciliitative light for others. The blind need not be blind. We need to become aware as clinicians, discard the naivete, transform our own lives and find self love, if we are ever able to illuminate a path for those we serve.

    Thank you Amy for reminding us all of that.

  13. ETG says:

    Hello, Amy! This morning I attended a webcast of your appearance at NIH. I think you are a true pioneer and survivor in every sense of the word. One of my closest and dearest friends past away from Triple Negative Cancer in February, and the care she sought was very similar to what you are doing along with some other treatments that were more along the lines of a holistic route. I never understood why she did not do the aggressive treatment, but now it is all very clear. I cried hearing your testimony and thought of her resilience and strength. You are also an example that we all are the CEOs of our own lives and we can direct and lead it in a way that matters to us – And being bold enough to trust yourself is more important than trusting the doctors. They cannot be our only source- We have to trust our guts and instincts. I will continue to pray for your strength! Be Blessed and stay a blessing to some many others!

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